[Senate Hearing 118-417]
[From the U.S. Government Publishing Office]
S. Hrg. 118-417
FROM INFANCY TO AGING:
THE EFFECTS OF CAREGIVING
ACROSS THE LIFESPAN
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED EIGHTEENTH CONGRESS
SECOND SESSION
__________
PITTSBURGH, PENNSYLVANIA
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AUGUST 7, 2024
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Serial No. 118-22
Printed for the use of the Special Committee on Aging
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available via the World Wide Web: http://www.govinfo.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
56-865 PDF WASHINGTON : 2024
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SPECIAL COMMITTEE ON AGING
ROBERT P. CASEY, JR., Pennsylvania, Chairman
KIRSTEN E. GILLIBRAND, New York MIKE BRAUN, Indiana
RICHARD BLUMENTHAL, Connecticut TIM SCOTT, South Carolina
ELIZABETH WARREN, Massachusetts MARCO RUBIO, Florida
MARK KELLY, Arizona RICK SCOTT, Florida
RAPHAEL WARNOCK, Georgia J.D. VANCE, Ohio
JOHN FETTERMAN, Pennsylvania PETE RICKETTS, Nebraska
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Elizabeth Letter, Majority Staff Director
Matthew Sommer, Minority Staff Director
C O N T E N T S
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Page
Opening Statement of Senator Robert P. Casey, Jr., Chairman...... 1
PANEL OF WITNESSES
Heather Tomko, Outreach Coordinator, National Research and
Rehabilitation Training Center on Family Support, University of
Pittsburgh, Whitehall Borough, Pennsylvania.................... 3
Tara Dawson McGuinness, Executive Director, The New Practice Lab
at New America, Washington, DC................................. 5
Delilah Picart, Actress, Pittsburgh, Pennsylvania................ 6
Victoria Snyder, Self-Care Senorita and Director of Strategic
Initiatives, Riverside Center for Innovation, Leet Township,
Pennsylvania................................................... 8
Linda Orndoff, Homecare Worker, Coal Center, Pennsylvania........ 10
APPENDIX
Prepared Witness Statements
Heather Tomko, Outreach Coordinator, National Research and
Rehabilitation Training Center on Family Support, University of
Pittsburgh, Whitehall Borough, Pennsylvania.................... 31
Tara Dawson McGuinness, Executive Director, The New Practice Lab
at New America, Washington, DC................................. 33
Delilah Picart, Actress, Pittsburgh, Pennsylvania................ 50
Victoria Snyder, Self-Care Senorita and Director of Strategic
Initiatives, Riverside Center for Innovation, Leet Township,
Pennsylvania................................................... 53
Linda Orndoff, Homecare Worker, Coal Center, Pennsylvania........ 54
Statements for the Record
Testimony of American Psychological Association Services......... 59
Testimony of MomsRising.......................................... 63
FROM INFANCY TO AGING:
THE EFFECTS OF CAREGIVING.
ACROSS THE LIFESPAN
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Wednesday, August 7, 2024
U.S. Senate
Special Committee on Aging
Washington, DC.
The Committee met, pursuant to notice, at 10:00 a.m., at
Vintage Senior Services, 421 North Highland Avenue, Pittsburgh,
Pennsylvania, Hon. Robert P. Casey, Jr., Chairman of the
Committee, presiding.
Present: Senator Casey
OPENING STATEMENT OF SENATOR
ROBERT P. CASEY, JR., CHAIRMAN
The Chairman. Welcome, everyone. This hearing of the Senate
Special Committee on Aging, this is a field hearing and the
hearing will come to order. I want to start by thanking our
host today, Vintage Center for Active Adults, and Heather--
where's Heather? Maybe she's in the other room.
Heather, thanks for making this possible, and I know your
whole team is part of that, so we're grateful for your
hospitality to talk about the critical issues we're here to
discuss, and I'm grateful to be with our witnesses, each of
whom I'll introduce in a moment.
The title of today's hearing is "From Infancy to Aging: The
Effects of Caregiving Across the Lifespan." Today, we'll focus
on the caregiving needs for children, for aging adults, for
family members with disabilities, and for the needs of those
who care for and support them.
Over the past 60 years, caring for our loved ones has
become more and more difficult, with many family members taking
on caregiving roles, in addition to their other family and work
responsibilities. Tens and tens of millions of Americans work
as caregivers. By one estimate, there are more than 1.6 million
here in Pennsylvania, serving as caregivers.
Some care for young children, some care for aging parents
and family members with disabilities, and some care for all
three. A large portion of adults are now in what we know as the
"sandwich generation." They're providing care for multiple
family members, often caring for children, while also caring
for an aging parent or a family member with a disability.
These increased care needs are putting significant stress
on families, resulting in lost wages, and decreased financial
stability. For example, and this obviously we'll hear lot, many
more examples today, but Linda Orndoff, who's with us today, is
a caregiver, and in her testimony, she discusses these
stresses, and that might be an understatement, pointing out
that she is currently making the same hourly wage as a
caregiver that she made as a quality assurance assistant in the
late 1980's and early 1990's.
However, most caregivers are not paid for their work and
often don't have a choice in whether or not to provide care.
Caregiving can be a role that provides great joy and great
sorrow, sometimes in the same day, or even in the same hour.
Almost universally, however, caregivers verge on exhaustion,
often putting their own personal and healthcare needs aside--
with finding childcare, and parents, especially women, often
leave the workforce to care for their children, their spouses,
or their aging parents.
To address caregiving needs, we must invest in childcare.
When I say we, I mean the federal government, should invest
more in childcare to ensure that there are enough providers,
and that families have access to affordable, quality childcare.
We also must address the needs of families with aging
parents and other family members who may have mobility, vision,
hearing, and cognitive needs, and we must ensure that families
of the over 61 million people with disabilities have the
services and supports that they need to be full members of our
society, and we must provide working Americans with paid sick
leave, and family and medical leave, to be available to provide
care to family members when needed.
We must continue to invest in programs like home and
community-based services, so-called HCBS, to make it possible
for aging Americans and people with disabilities to receive
care in their homes and in the community. A common theme that
many families raise when talking about care is the
inconsistency of care and the turnover of staff, whether they
be childcare providers or home health staff.
Today's witnesses shine a spotlight on the value and the
challenge of the unpaid work of family caregivers. We need to
do more to acknowledge them, to lift them up, to provide
families with the resources they need to care for each other
and to care for themselves, and Isaac Bashevis Singer's short
story, Gimpel the Fool, he writes, "God gives us burdens, also
shoulders." Some shoulders are strong, others have been worn
down. We need to do more, and again, I'll say it, the federal
government needs to do more to support those providing care as
well as those needing care. As a country, we can provide
supports so that all of our shoulders can provide the care our
loved ones need.
Today, we'll hear from five witnesses who will discuss
their experiences receiving care and as caregivers. I look
forward to their stories about the challenges they face, the
stressors in their lives, as well as the successes they have
experienced in their caregiving roles.
Let me start by introducing our witnesses. Our first
witness is Heather Tomko. Heather is the outreach coordinator
for the National Center on Family Support at the University of
Pittsburgh and lives in Whitehall Borough. Heather, thanks for
being here with us, and Heather also serves as the connection
between research grants and the larger family caregiving
community. She also has a website that comments on daily life
as well as disability issues. Heather, great to be with you and
thanks for being with us.
Ms. Tomko. Thank you.
The Chairman. Our second witness is Tara McGuinness. Tara
is founder and executive director of the New Practice Lab at
New America. She also served in the Obama Administration as a
senior advisor in the Office of Management and Budget,
addressing healthcare and family economic issues. She
specializes in management, data practices and technology to
address family and community policies. Thanks so much, Tara,
for being with us.
Our third witness is Delilah Picart. Delilah is an actress
and educator who cares for her mother with dementia, and her
brother who has fragile X syndrome and autism. She also has an
18-year-old daughter, and she lives here in Pittsburgh.
Delilah, thank you for being with us today.
Our fourth witness is Victoria Snyder. Victoria is also a
resident of Allegheny County, Leet Township, and is a single
mother and small business owner who cares for her six-year-old
son with autism. She's been involved in caregiving for both her
mother and her late grandmother Victoria, thank you for being
with us today as well.
Our fifth and final witness, I made reference to in my
opening, Linda Orndoff. Linda is a homecare worker who cares
for her 89-year-old deaf mother with dementia. In addition to
caring for her mother, she serves as a guardian for her twenty-
seven-year-old grandson who has autism along with other health
conditions. She lives in Cole Center, Washington County. We're
grateful to have you here.
Why don't we start with our witness testimonies. Every
witness will provide testimony, and then I'll start a round of
questions, so Heather Tomko, we'll start with you. Thank you.
STATEMENT OF HEATHER TOMKO, OUTREACH COORDINATOR,
NATIONAL RESEARCH AND REHABILITATION TRAINING
CENTER ON FAMILY SUPPORT, UNIVERSITY OF PITTSBURGH,
WHITEHALL BOROUGH, PENNSYLVANIA
Ms. Tomko. Thank you so much for having me here today,
Chairman Casey. My name is Heather. I am 35 years old and grew
up here in Pittsburgh. I went to both Carnegie Mellon
University and the University of Pittsburgh, and I work there
now at the National Center for Family Support where I serve as
liaison between academia and the larger area community.
As you can see, I have a disability. I have spinal muscular
atrophy, which is a neuromuscular progressive disease, so what
that means for me is I've never been able to walk. I've used a
wheelchair for as long as I can remember, and I need help with
the things that most people just take for granted every day, so
getting in and out of bed, using the bathroom, taking a shower,
even heating a meal prepared. These are things that I cannot do
independently.
For the entirety of my childhood. I got that help through
my parents who were my unpaid family caregivers and helped me
with those basic daily needs, but when I went to Carnegie
Mellon University, I wanted to live in the dorms. Obviously, my
parents couldn't come with me there, so that was my first foray
into paid care giving and having personal care attendants.
While I was adjusting to living away from home for the
first time, I was also addressed into teaching new people how
to do what are pretty intimate tasks for me, and as you heard
in the intro, there was a lot of turnover and a lot of
instability, so a while I did go through an agency to help me
find and schedule those PCAs, and that when one of them had to
call off, when the agency would try to find a replacement, the
responsibility was on me to make sure that they found one
because I was the one without care if they weren't able to.
When I was studying for an exam the next morning, or
finishing my homework or assignment, I might also be calling
the agency every hour to see if they had found a replacement
yet, or making an 11:00 p.m. call home to my parents asking my
mom to come stay the night at the dorms so that I was able to
go to class the next day and also get much needed sleep.
This instability was a large part of the reason that I
moved home after college and that I still live with my parents
today. We have a patchwork system of unpaid care through my
parents and unpaid caregiver, and my sister shares the same
disability that I do and lives at home with me, so we are
constantly figuring out logistics of two adults trying to live
their lives and deal with the uncertainty of when a caregiver
has to call off, and we all have to figure out our schedule for
the next day and how to make just the basics of a day happen,
and these are my experiences, but these are something that I
see shared every day in my role as the outreach coordinator. No
matter what webinar or program I'm holding, I get multiple
questions of how family members can find paid caregivers to
help them better support their loved ones, because right now--
paid and unpaid caregivers as two separate entities. They're
really existing on a spectrum. Family members are looking for
paid caregivers to help them support their loved ones so that
these family members can also take care of themselves and their
needs.
My parents are aging. I'm 35. I know that they can only
provide the support that they are right now for a few more
years, and I really fear where that leaves me to have a vibrant
life, and work, have friends, and hobbies, and living up in a
nursing home is a very real fear of mine that I grapple with
every day.
This is something that has been bad always, but after the
pandemic, when other companies reacted by raising wages to make
up for the loss of workers, as you have mentioned, caregivers
have not seen that increase in wages, so I am struggling with
not knowing if a replacement caregiver will be found when
mother's gone off or if I'll have to deal with the mental and
physical strain of trying to train new caregivers, daily or
weekly, just to meet my basic needs.
We need to see increased wages for paid caregivers to make
this into a viable career choice and not one that you have
shifts more in the fly, so I urge you, Chairman Casey, and the
Committee, and the federal government to invest in the paid
caregivers to make this a viable career option so that people
like me can live our lives to the fullest. Thank you so much.
The Chairman. Heather, thanks so much, and thanks for
sharing so much of your own personal experience, and we're
going to get further into it with some questions.
We'll turn next to Tara. Thank you.
STATEMENT OF TARA DAWSON MCGUINNESS,
EXECUTIVE DIRECTOR, THE NEW PRACTICE
LAB AT NEW AMERICA, WASHINGTON, DC
Ms. McGuinness. Thank you, Chairman Casey.
"We resonate with many here. The youngest grandson is
autistic. You know what I'm saying? I can't take him everywhere
because I have to hold his hand 24/7, even walking down the
street. I can't release his hand because he'll wander off."
These are the words of Walter, a grandfather and sole
caregiver of his two grandchildren in Philadelphia. He is one
of the number of families who are part of our Thriving Families
Project, an ongoing effort in Pennsylvania and other states to
really listen to families, as we're doing today, and get a
whole picture of what helps them thrive.
Unfortunately, at a policy level, what we're doing here
today is very rare. We don't often center on the family
experience. We approach these phases of life as separate
challenges; early education, childcare, policy, disability.
However, as you're hearing from Heather and others, care shows
up all at once in a family. If we're raising young children, we
might also be caregiving for our parents. If we are
grandparents, we might, like Walter, be unexpectedly raising
our grandchildren.
In Pennsylvania, that is true for more than 76,000
grandparents who live with children or whom they're
responsible. Nearly half of these grandparents are in the
workforce themselves. Other families live with challenges that
are different. I know this to be true. I have young kids and
aging parents. Like 20 million American families, mine cares
for someone with disabilities.
Today in the U.S. though, we make it way too hard at all
ends of the spectrum. First, to start and raise a family.
Household costs go up with a birth of a child, right at the
same time that wages go down. About 130,000 new children are
born in Pennsylvania every year, and folks are starting to
raise a family.
When a new baby is born, parents are on their own to figure
out how to manage care because there is no paid family medical
leave. Having a child is just the beginning. Being able to make
a living and raise kids is hard because most communities don't
start school until kids are five. That's true for 800,000
working parents here in Pennsylvania with kids under the age
five, and the majority of them need care.
This care comes at a very steep cost. Last year, the
average Pennsylvanian family paid about $14,000 a year for
center-based care. This of course varies widely across the
State from around $8,000 a year to nearly $20,000 in other
places. Here in Allegheny County, the average for a year of
care is around $13,700.
Affordability is just one piece of the equation. Childcare,
staffing shortages mean there's simply not enough providers to
meet families' needs.
In Pittsburgh, childcare workers make on average $13 and 42
cents per hour, which is about $28,000 of an annual salary. For
a childcare worker to have a modest living standard and raise
their own children, they would need, on average, $40,000 more a
year than they're making. Wages are far too low, as we've
discussed, and this has huge effects because often, these jobs
are done by women and women of color, and so, the rippling
effects of low wages spreads out.
It isn't just families with young kids, families taking
care of a loved one with a disability as 14 percent of
Pennsylvanians are while trying to earn a living have
challenges, and as we age, you know, modern science has allowed
us to live longer and more than any point in history, but that
means we have new care needs. Pennsylvania is home to,
generally, 3.4 million older adults. To meet their needs,
Pennsylvania will have to recruit 275,000 new care workers in
the next six years, and this turnover rate here is around 64
percent.
We have experienced dramatic shifts in how we live. In just
a few generations, we moved from a typical family, having one
person at home doing caregiving, to a situation where most
American children are raised by two working parents, but we
failed to make changes that would create infrastructure to meet
these needs. This care fix isn't an impossible dream.
Nearly all countries in the world have the things we're
being discussed, and even 13 states across America have paid
family medical leave. Globally, our partners all have
investments much greater than ours in high quality early
education. Making caregiving a legislative priority need not be
partisan. 82 percent of voters support making it easier for
people to care for the people they love.
Thich Nhat Hanh said, "Caring is the bridge that connects
us to one another." Today, we are in deep need of more
connection and policies that enable us to do and care for those
we love. I want to thank Senator Casey and the Aging Care
Committee. This hearing is a very important step for the
federal policies to anchor into the voices of folks like those
in the room, and to answer what families are universally asking
for; policies that support them through the moments of all
their lives that require care.
Thank you, Senator Casey.
The Chairman. Tara, thanks so much, and I was highlighting
a lot of those numbers as you were giving the numbers we need
to remember when we're formulating policy. We'll try to get
into them a little bit later.
Delilah.
STATEMENT OF DELILAH PICART, ACTRESS,
PITTSBURGH, PENNSYLVANIA
Ms. Picart. Thank you.
Good morning, Chairman Casey. My name is Delilah Picart.
I'm from New York City, yet I've called Pittsburgh,
Pennsylvania, my home for 20 years. My professional career as a
working local actress has allowed me to appear in films and
commercials, but currently I have a job I didn't apply for, and
I can't quit.
I am a caregiver to my brother and mother. I moved them
here from East Harlem in April 2023, when it became obvious
that mom couldn't take care of herself or my brother anymore.
My brother, Eric, has fragile X syndrome and severe autism. I
always anticipated I'd have to take care of him. My mother,
Vivian has moderate dementia. I didn't think I would be taking
care of her. My father, Enrique died in 2011 from complications
of Alzheimer's disease.
I have a complicated relationship with my mother. She
believed in tough love parenting, and with therapy I realized
we are fundamentally different people, so for my own mental
health, I would go and visit my mother and brother three times
a year, never for more than five days. My mother called me one
evening in July 2022. She said she was having a hard time, and
she wanted to get a power of attorney document.
I decided to visit my mother and brother once a month for a
three-day weekend, and over the next nine months, I saw my
mother ignore and neglect my brother. She would forget
appointments. She would forget to feed my brother. She no
longer cooked. Her refrigerator was packed with containers of
food wrapped in plastic bags. She had bags of liquefied
lettuce, molded vegetables, old bags of bacon.
It was very obvious to me that Vivian had dementia. Eric
was being neglected and they needed to move closer to me. I
asked my family members to help pack her up to move with a
target date of April. As a caregiver to two individuals with
very specific different needs, I am exhausted.
I'm mentally, emotionally, physically, and psychologically
tired. I don't have the luxury or the monetary fluidity to take
a break. As their primary caregiver, I manage their daily care,
which includes pill management, preparing all meals, laundry,
garbage disposal, transportation, dressing, coordinating, and
scheduling of companions, cleaning the apartment, grocery
shopping as needed, scheduling doctor's appointments, personal
grooming appointments, bathing reminders.
My family lives in a two-bedroom, two-bathroom apartment,
four blocks away from my house in Shadyside. It was decided
very quickly that they could not move in with me and my fiance,
Todd. Mom, had a very hard time adjusting for the first six
months. She was aggressive. After she threw a computer tablet
at me and missed, I got her on meds that have calmed her down.
My brother was very happy with the move. He was getting
three meals a day and healthy snacks. I introduced him to red
peppers, and avocado toast, and lemonade. I could tell he
finally felt validated and acknowledged. Eric was receiving
services in New York City, but he was ineligible in
Pennsylvania until he had legal residency for six months. Even
then, I had to show medical records for over 30 years ago,
describing and diagnosing his dual disability.
By January of this year, he had a very helpful case worker.
His individualized support plan declared him an emergency case
because he was living with his mother who was diagnosed with
dementia. Still, it took eight months before he received
emergency waivers. Recently, his behavior has changed, and now
he leaves his apartment and arrives at my house to sit on my
porch by 5:00 a.m. I have adapted. I love my brother immensely.
I have a good life. I'm fortunate. I have a therapist, a
support group, and a weekly session with a trainer at a gym.
Both Todd and my daughter help, yet, I've had low points. I've
watched the Twin Towers fall. I've had four car accidents. I've
had a stalker terrorize me, and I've had my father go missing
for 34 days. This is the most challenging event I have ever
experienced.
When I'm asked, "How are you?" I give a very bland reply,
"I'm fine. Everything's good." With my close friends and a few
family members, I'm honest. I'm sad, or angry, or good in this
moment. I'm tissue paper thin. I'm spent. I'm struggling. I
just can't today.
In an ideal world, a hotline would be available to provide
urgent support. An example, cleaning services, laundry
services, meal delivery, companionship. Medicare, and Medicaid
would easily transfer information across states. A caregiver
would be granted a parking pass to go into the disabled parking
spots at the grocery store and hospitals, et cetera.
State programs could provide college credit to graduate
students in the social services department and have said
students provide hands-on companion care to people with
intellectual developmental disabilities. Supplemental income
would be provided to caregivers with more than one individual
in their care and would include people with all forms of
dementia and severe autism, not exclusively for people who are
incapacitated and home bound. Service agencies would receive
more money to have more staff and more respite housing, so
emergency means immediately, not eight months.
Thank you for your time and your attention, Senator.
The Chairman. Delilah, thank you for sharing your personal
story, and I like to think I have a challenging job, but
nothing compares to what you and others are living with every
day, so we're grateful you're willing to share it in a public
setting to help us better understand what the challenges are,
and to then by definition, challenge us to find better
solutions.
Victoria.
STATEMENT OF VICTORIA SNYDER, SELF-CARE SENORITA
AND DIRECTOR OF STRATEGIC INITIATIVES,
RIVERSIDE CENTER FOR INNOVATION, LEET
TOWNSHIP, PENNSYLVANIA
Ms. Snyder. Good morning. I'm Victoria Snyder, and I'm a
single mom to a terrific son, Braxton, who's about to start
first grade. We live here in the Pittsburgh area and I am a
proud member of MomsRising.
I first want to start and say thank you to Senator Casey
for organizing this hearing and for all you do to improve the
support for caregivers. It truly means a world to moms like me,
and I appreciate the chance to share my family's story and many
families that are similar to mine. I'm a sandwich generation
mom who has sole physical and financial responsibility for my
son. Over the past few years, I've also provided care for my
mother and for my late grandmother.
Juggling care for a young child and aging relative has
become an enormous challenge as we've heard, financially and
emotionally. These challenges are much worse because lawmakers
have failed to ensure working people can access paid leave, and
quality, affordable childcare, and elder care.
The beginning of the pandemic was especially hard for our
family. During Covid, Braxton was diagnosed with being on the
autism spectrum. He needed occupational speech and behavioral
therapy each week, and I don't know if you've ever had to do
Zoom with a two-year-old, but it's not exactly an enjoyable
process. My grandmother got Covid and spent months going in and
out of the hospital. My mom also was injured during that time,
and she spent some time in the hospital.
I had no money coming in as I had lost my job when Covid
had happened, and couldn't look for a job because I had no one
to watch Braxton because childcare was closed. It was an
extremely scary time, filled with a lot of worries about what
tomorrow would bring, because of the unknown and even
flexibility with my own schedule and Braxton's needs, I started
a business, Self-Care Senorita, and worked as a small business
coach and DEI consultant. During all this, my biggest fear was
always what would happen if I got Covid, or worse, an injury
that would cause me to not be able to work. I couldn't get
sick. I couldn't get hurt. What if I did? I wouldn't be able to
work, and then what would happen with my family? Destitution
was always a knock at the door. Those what-ifs still haunt me
every day.
Thankfully, Braxton's preschool finally reopened, and
having childcare again was a relief and allowed me to work more
hours, but it also cost me $800 a month, a big portion of my
take home pay, and that was being discounted as a low-income
single parent. Last year, Braxton started kindergarten, and I
took a full-time job so he could have medical benefits. I'm
still struggling with childcare outside of school hours. At
first, I tried enrolling him in an afterschool program, but
that program is expensive and ultimately, we just couldn't
afford it.
Instead, I interrupt my workday each afternoon to pick him
up from school, which is stressful. In order to get my work
hours in, I log in before school, I take him to school. I
pause, get him dressed, get him ready, take him to school, drop
him off. Pause, and work again to drive to work. Go to work,
work, leave there to go get him from school, and then come home
and work most evenings.
It's exhausting trying to manage it all. Even today, there
were seven steps to my morning. I had to take my son to my work
for a coworker to take him to childcare, his summer camp,
because it didn't open until 9:30, so even being able to do
really amazing things like this, there's still difficulty in
access to childcare.
My new job does also does not provide paid leave. I still
worry about what would happen if my mother or my son were to
get sick. I have to save all my paid time off for a what-if
scenario instead of using it for a vacation time with family or
even for my own sick days.
Unfortunately, I know so many parents and caregivers can
relate to these challenges. Here in Pennsylvania, about two-
thirds of us do not have access to any paid leave through our
employers to care for our kids ourselves or our aging loved
ones. About 60 percent of us live in childcare deserts, and for
kids under five, care costs nearly as much as public college
tuition. These challenges have limited my income and my career
opportunities, and I know so many moms who can say the same
thing. When working people like me can't fully utilize our
skills, that's bad for business and our overall economy.
As I've juggled these responsibilities over the years, I
often feel like I'm running in a thousand directions at once.
Sandwich generation caregivers like me are struggling with
burnout and exhaustion. I joined MomsRising because I know the
only way we'll see progress is if we raise our voices. So, I'll
never stop using my voice to tell lawmakers to invest in the
care infrastructure working families' need with paid leave for
all, affordable, high-quality childcare, elder care, and
disability care, and expanded childcare tax credit.
Senator Casey, thank you for what you do and the fight that
you do for us. Thank you.
The Chairman. Victoria. Thank you for sharing your story as
well, and you've given us a lot to think about on that list you
provided at the end of action items. Victoria gave us a list of
action items at the end of her testimony, and I think that's
something that federal legislators like me ought to be
cognizant of, so thank you.
Finally, Linda, we'll conclude with you.
STATEMENT OF LINDA ORNDOFF, HOMECARE WORKER, COAL CENTER,
PENNSYLVANIA
Ms. Orndoff. Hello, Chairman Casey. My name is Linda
Orndoff. I'm a homecare worker from Coal Center, PA, and I take
care of my elderly mother and my oldest grandson who has
autism.
I'm a participant-directed homecare worker, and this means
I work directly for my participants; my mother, and my
grandson, rather than through an agency. This type of care
allows the participant to direct their own care and to choose
who works for them. A lot of times, like in our situation, this
means family members. They choose people they know and are
comfortable with rather than whomever the agency sends.
Nevertheless, whether you're a participant-directed or an
agency worker, doing homecare work is a big sacrifice. When I
was asked to come here today to speak to you, I was told to
just tell my story. I want to share what it's like to be a
homecare worker, but to make you understand what a homecare
worker goes through, you need to know why the situation is like
it is, because of poverty, wages, and no benefits, we have a
huge crisis in the homecare industry. Tens of thousands of
homecare workers must depend on state and federal system
programs like food stamps, Medicaid, and sometimes cash
assistance just to live.
In our country, there's only one caregiver for every six
people who need more care to make it possible for them to be
able to remain in their homes. Without enough homecare workers,
many people are being forced into nursing homes and assisted
living facilities as they cannot find caregivers to keep them
at home.
In 2021, the annual turnover in the care workforce was 64
percent and it has only gotten worse. It's gotten worse because
most potential caregivers are unable to do this type of work
when it pays so little and offers no benefits and no security.
In my case, when my mother and my grandson began needing my
care full-time, I had a big choice to make put; them in a home
or quit my job, and I chose them.
After that, everything about my life changed. When I had to
quit my job, I took a huge pay cut and suddenly I had to figure
out how to live on poverty wages. I'm currently making $13.52
an hour, which is the same hourly wage I made back in the late
80's and early 90's. I could barely live on those wages then,
and I certainly can't live on those poverty wages now.
When I chose to take care of my family and stop working, I
no longer had health insurance, no paid sick time, no paid
vacations, and no type of retirement benefits whatsoever. My
mother and grandson depend on my care ten hours a day, seven
days a week. My mother has polycythemia vera which is a rare
blood disorder that makes your blood too thick and can lead to
strokes and organ damage. She also has chronic kidney disease.
She is also senile and has some dementia. She gets angry a lot
and is very defiant, mostly toward me.
We live in the country, on four acres, and she likes to
wander away a lot--mostly tracking her cat. Two summers ago,
she disappeared from me, and I couldn't find her anywhere. I
was about to call 911 when I heard a noise at the top end of
the property. I found her in weeds up to her waist, in bedroom
slippers, trying to pull old lumber with rusty nails in it that
my brother-in-law had stacked there to burn, so now I have
video cameras set up everywhere to track her.
Last summer she fell in the front yard about 100 yards from
the house, looking for the cat, and she couldn't get up, so she
was crawling up through the yard. She lets the cat out the
front door and immediately goes to the back door and starts
calling her to come in. My mother likes to get up in the middle
of the night and rearrange all the cupboards in the house. Last
year when the overflow on the bathroom sink rusted out and
started leaking, I told her I was going to have to replace the
sink, but she decided it was the drainpipes instead, so she
took a hammer and fixed them. Boy did she ever.
On top of all of that, she is totally deaf, even with her
hearing aids in. This makes communication with her incredibly
difficult. I have tried several voice-to-text programs, but
they screw up more than they work, so I have to write lots and
lots of notes. I could tell you a lot more stories, but suffice
it to say, she keeps me very busy.
In 2014, shortly after I took guardianship of my oldest
grandson, he was diagnosed with Asperger syndrome. Asperger
syndrome is a previously used diagnosis that is on the autism
spectrum. He also suffers from chronic depression and obesity.
In 2019 he and I started a walking program, and he lost over 60
pounds in three months. I was very proud of him.
Unfortunately, my mother's mobile home that they lived in
caught fire. It was a total loss. I was able to get them a
newer, manufactured home to replace it, but everything was
reliant on me, and by the time I got everything up to the newer
codes, and got the house set up and them back home, he had put
almost all the weight back on. Since then, with my mother's
further decline, it has been very difficult for me to be able
to leave the house. My grandson's weight has continued to
escalate, and I worry every day about his health, which is
starting to decline.
I am very active with my union SEIU, United Home Care
Workers of PA. In recent years we fought for and won paid
training classes for homecare workers. These classes teach home
care workers CPR and safety training, which I have completed.
They also offer classes in working with dementia and autism
patients, that I would love to take. I feel they would help me
in dealing with the day-to-day tasks of taking care of my
mother and grandson.
However, these are both eight-hour courses, and while they
are paid training, when you have no one to cover for you, it is
very difficult to get them done. As a participant-directed
worker, I do not have the same collective bargaining in PA like
other workers. This needs to change so we can fully advocate
for ourselves. In states where homecare workers have collective
bargaining, they have won important victories like healthcare
and living wages, because of the workforce crisis in our
industry, it is nearly impossible to get backup care, so if I
get sick there is no one there to take care of them. A couple
of years ago when I caught Covid, I was completely down for
five days. My older sister who can sometimes help me was in
Florida on vacation and there was no one to feed my mother or
grandson.
This year in May, I was bit on the neck by a spider. I got
very sick for almost a week, but I managed to keep working. I
don't have health insurance, so I didn't go to the doctor.
After a week I started to get better, and then I got sick
again. I had a rash on my neck that was spreading that I had
attributed to the spider bite. Then the pain started, and it
got so bad I went from wondering if I was going to die to
hoping that I would. I finally went to a doctor even though I
couldn't afford it. I was eventually diagnosed with stage three
Lyme disease, but if we had health insurance, this never would
have progressed to that point.
I would like to be able to tell you, other than the fact
that bugs seem to like me, that my story is a unique one, but
it is not. In my time in the union, I have spoken to a lot of
workers who work 90 and even 100 hours a week. I have listened
to the story of a young woman from Philadelphia who after
working a full day taking care of her elderly diabetic mother,
she then loads her in a car, even in the dead of winter, with
her blankets and medicines and drives for DoorDash all night to
keep a roof over their heads. I have heard stories from workers
who have contemplated suicide from depression over facing
eviction from their homes.
We all know homecare workers save the system, and
taxpayers, tens of thousands of dollars per year caring for
folks in their homes over putting them in nursing homes or
assisted living facilities, and that these folks have better
overall health outcomes, but we need to come up with a plan for
how to get caregivers out of poverty. Otherwise, there is no
way that we can build a sustainable homecare system. We can't
take care of them if we can't take care of ourselves. Thank
you.
The Chairman. Linda, thank you as well for providing your
own personal testimony. Look, I've used the phrase, and we you
hear it a lot these days, that there's a care crisis in America
or a caregiving crisis in America. You don't need to hear much
more than what you just heard from our witnesses to validate
that point.
We have a lot of work to do as a country. We call ourselves
the greatest country in the world, and we are in terms of our
military and our economy. There's no country in the world
that's even close, but we're not the greatest country in the
world when it comes to caregiving. We've got a lot of work to
do. I want to explore some of that with our witnesses now. I'll
start with Heather.
Heather, you mentioned receiving care from your parents and
from paid caregivers. You also do excellent work in, in your
own capacity as the outreach coordinator for the National
Center on Family Support at Pitt, and we're grateful for that
work. In that work. You hear from hundreds of people who need
care support. You said in your testimony that paid caregiving
or paid caregivers, I should say, aren't, "necessarily to
replace unpaid care, but to supplement it to allow family
caregivers the time and space to care for themselves."
I'm quoting you when I say that, but can you tell us more
about having adequate caregiving services, how those services
help you and those that you interact with, how they enjoy non-
work activities and make it possible to have relationships
outside of their family?
Ms. Tomko. Sure. As I mentioned it and as you just
repeated, I think family caregivers like my parents and paid
caregivers, but with the balances right now, there's much more
reliance my parents and much less reliance on paid caregivers
because we have not been able to find stable paid caregivers
who are able come back to really help with my care, so because
of this, both of my parents definitely limit and feel stressed
with their own jobs because they know that they're responsible
for their work, but they're also responsible on some days for
getting me out of bed so that I can go to my work, so they're
declining meetings that they should be at because it's either
saying no to a meeting or telling me I can't get out of bed for
the day.
In terms of my own life, it's been the same. I'm declining
meetings because I know that logistically it's not possible for
me to attend on time because there are only so many hours in a
day, and my life, my getting ready takes longer than a normal
person's. You know, what might take someone who's not disabled
five minutes to wash their face and brush their teeth is going
to take me 10 or 15 just to get set up and get comfortable.
When I'm in my chair, I'm in my wheelchair for five hours
at a time, so if I'm not comfortable and situated properly, I'm
going to be uncomfortable for five hours, and that's physically
dangerous and mentally and emotionally stressful.
Right now, we're all living kind of in the day-to-day and
trying to just get through one day and onto the next, but if
there were a better balance, if I were able to find more paid
caregivers to have and take some of that load off of my
parents, both mentally and physically, we would all be able to
have a much less stressful life and be able to focus more on
family things and less on the logistical challenges of just
day-to-day life.
I see that in the many, many people I have talked to
through my job. When we had a webinar and opened the Q&A, they
weren't asking for paid caregivers to replace what they do.
They love the people that they're caring for, but they didn't
need help to be able to live their own lives and take care of
themselves.
Right now, we're just not able to balance those needs
appropriately, and there's a very, very heavy load on family
caregivers and a heavy load, frankly, on my paid caregiver who
knows that if she calls out, the burden is falling on my
family.
I know that I've seen her limit her own appointments and
days off and time with her own family because she does feel
obligated to care for me, and I appreciate that more than I can
ever say, and I wish that I knew if she called off, that I was
able to find a reliable path and let her not make her career,
her job into her life as well. Thank you.
The Chairman. Heather, thanks. Thanks for reminding us
about your own circumstances, but also those that you hear
about from those that you interact with at work. I'll turn to
my left side of the table to ask a question. Maybe the same
question for Delilah and for Tori, as I was calling you,
Victoria, albeit a little less formal, and Linda,
Each of you shared some of the unique circumstances that
you face in your caregiving responsibilities with your
families, but I guess I wanted to--if you could just itemize,
if you had to list, what's the most--or what's the list of the
most difficult challenges you have when it comes to caring for
multiple family members? Maybe Delilah, we'll start with you,
and we'll go down until----
Ms. Picart. Time scheduling and coordination of time. I pay
out-of-pocket for a companion for my mother and a companion for
my brother. I've had instances where I've taken my mother to
her doctor's appointment, and for health reasons, my brother's
companion has to bring my brother back to the apartment early,
so I have to maybe not stop off and get my mother lunch. I have
to go to the apartment to receive my brother, and then I have
to give my mother her pills, her afternoon pills, and then I
could go out and get them both lunch.
There have been times when I'll take my brother out to go
to the movies. That's easily a three-and-a-half-hour window.
I'll have to return him and take him to back to the apartment
that he shares with my mom, and unfortunately, my mom may have
soiled herself, so now I have to get her to--there goes my idea
of getting back and dropping him off and going shopping. Now I
have to take care of her, make sure she has a shower, make sure
my brother is okay because he gets agitated.
Scheduling and coordination of time for the two of them is
really the biggest, and also with fragile X, my brother has a
compulsion to eat, so I can't leave any food in the apartment.
For instance, he saw Rocky about a month and a half ago, and he
decided he could eat raw eggs, so I had to remove the raw eggs
from the apartment, so there's no food in their apartment. Mom
forgets to eat, so, and my brother will eat anything, so just
something like that. Being conscious of portion control for the
two of them because they both have diabetes, and reminding my
mom that she has it because she's in a state of denial about
it. Teaching my brother that he can have healthy snacks that
don't include soda, things like that.
I have a saying where I have an economy of time. When I'm
in the apartment, I make sure--and I'm usually there early in
the morning to prepare, to give my mother her pills and prepare
breakfast for her and then bring her here as a matter of fact--
if it gets messed up, such as this morning she had an accident
in her bed, so I had to strip the bed, help her take a shower,
and then dress her, and then prepare her breakfast and stuff
like that. Also, I could get here on time, and I could get her
here on time, so I practice the economy of time when I'm with
her and with my brother.
The Chairman. Thank you. Tori.
Ms. Snyder. I think the hardest part is that access to
childcare is difficult. Affordable childcare is difficult, but
quality childcare is difficult, right? There's a lot of people
I could just pass my kid to, but he's on the spectrum, so what
happens if he gets overwhelmed and runs off, because he's
sometimes an eloper. That stress sometimes is more. To me is
not worth it. I'd rather just not do, just not go, because I
could provide the better care, so that ties into what Heather
had said. A lot of career--lack of advancement because I just
can't be places. I can't do things. Even remote things, you
still have a kid that still needs time with his mom. He's been
at school all day. He doesn't want me sitting in front of a
computer. He doesn't get that, right? Furthermore, I don't want
to do it either. I want to play with my kid, so that's a
difficulty.
There's not a lot of senior care. My mom is still fully
functioning. She's wonderful, slight health concerns, but as
she ages, I do not make enough money to cover childcare and
potentially supporting of her. I know that she feels that worry
and she feels that strain, and it's one of those things like--I
guess, we'll have that conversation when we get to that point,
but that's always a worry.
To navigate care services is difficult. There's not an
office that you go to. If you make too much money, you don't
qualify for services. If you make not enough money, you can't
live because there's no way and nowhere to pay for anything, so
I feel like there's this gap of everyday Americans that need a
little extra, but there's no way to get a little extra, so it's
not just the caregiving, but it's if I send my child to school,
I need to know that he has a quality education.
We live in a more affluent district that I really can't
afford because that school has a better special education
department to support him. We could live in a town over, but
that would not be supportive of his needs, so you struggle with
that. School choice, I think, is an issue in this State as
well. That's a different conversation for a different committee
at a different time.
I think all these issues compile of you're just trying to
make every day manageable, and you feel bad too because the
caregivers we have had and the childcare we've had, they've
been wonderful, amazing people, and they deserve to have the
working wages as well. Neither of us should be saying, well,
here's something for you today, here's extra for you. Or if
they miss a day of work, they then can't take care of their
family as well, and so, it feels very chicken-and-egg scenario.
I think we all just want to eat and have a fruitful farm,
and so, I think conversations at a deeper level of
infrastructure and care, but also having it with people that it
affects their lives the most is most imperative. Having
lawmakers just say, well, here's a budget and this can go is
great, but I think you have to hear how that money would be
allotted, and where it would go to, and how it would support
the everyday person in their caregiving and childcare needs.
The Chairman. Tori, thank you. Linda?
Ms. Orndoff. Yes. I agree with Delilah that the hardest
thing is the problems of scheduling time when you're dealing
with two different, you know, participants, and especially like
with my mom, she needs, you know, almost constant care.
My grandson, like I explained, he is on the autism scale,
but his needs--I don't want to say his needs get overlooked--
but his additional needs, like when we did the walking program
before, you know, with him, you've got to make things
interesting and all of that.
When we did it, you know, we would get in the car and we
would drive to area parks and that type of thing. It had to be
an adventure with him. You know, you can't just like take him
outside and walk him around. He's not going to do it.
You know, his doctor had a long time ago described him as
passive resistant and that that's how he is. He just sits down
and won't do it. You know, and to try to worry about her, what
she's doing and everything, and to try to take care of him.
Like I said before, you know, he discovered DoorDash a few
years ago, which has been my nightmare. You know, like up until
that point, I could control, you know, what food was coming
into the house, so I had a little bit of control over his, you
know, weight problems and things, and once he discovered
DoorDash, all of that went out the window. You know, they're
pulling up my driveway at 10 o'clock at night, that sort of
thing.
It's just very hard to try to manage, you know, to--but I
can't leave with him and take him on walking adventures and
when there's no one there to cover, you know, to have with my
mother there, and you know, with the shortage in the workforce
in this industry, there's no way for me to be able to have
somebody else there, so the scheduling thing, yes, I would say
is the biggest, biggest dilemma.
The Chairman. Thank you. I want to turn to Tara. I wanted
to ask a question that focuses on unpaid and family caregiving.
Delilah had said in her testimony about the demands of
caregiving, and I'm quoting just part of what she said in this
paragraph of her testimony, but she said, ``I'm tissue paper
thin. I'm spent. I'm struggling.'' She went on from there, but
you study in your work, Tara, the family. You study families
and the effects of both policies and circumstances that they
face, and you mentioned in your testimony, the policies often
fail to center on the family experience. Can you share some of
the long-term effects of unpaid caregiving on families and
family members? How do you think we could better support people
doing this important work?
Ms. McGuinness. Certainly. The effects on caregivers, as
you heard from the wisdom in the room, which really, I want to
emphasize is not on average. That behind every person sitting
at the table is another million people with the same problem.
The caregivers abstain from finding paid work, or following
passion and education due to unpaid care duties. This is both
important at the individual level for people to live their own
promise, but also has a collective impact on our economy. The
effects are profound, and more profound for women who do the
majority of unpaid work, and who often experience in their own
individual lives.
Stunted opportunity growth, especially, you can see it in
the data in childbearing years. I think Tori said you went back
right when kindergarten started. There is a massive increase of
women in the workforce at the age in which everyone has school.
The Chairman. You said stunted. What'd you say after that?
Ms. McGuinness. Opportunity.
The Chairman. Opportunity, yes.
Ms. McGuinness. Opportunity, advancement. It could be
career growth, it could be education, it could be fulfilling,
having the freedom of fulfill your dreams, and this aggregates
to a wide gender earnings gap. This is both true for the unpaid
caregivers who are skipping a meeting or an opportunity because
it's just not, logistically, and timing-wise, practical. You
can see it in a gender earnings gap because of who caregivers
are. It has massive race implications because of who paid
caregivers are.
These are just a few, Senator Casey of the ways in which
what we're hearing here is individual stories ladder up.
Pennsylvania alone, you can actually aggregate the lost dollars
to the economy, so these aren't isolated edge cases. This is a
collective problem that shows up at a structural level for
educational attainment as well as the larger economy. Thank
you.
The Chairman. I wanted to go back to Linda for a question.
Linda, you mentioned you're a member of Pennsylvania, SEIU
Healthcare, a union that I know well. A union representing
nurses, hospital workers, nursing home workers, homecare
workers, and you've met with state officials about the needs of
people who receive homecare services and the workers who
provide the services.
You said in your testimony, ``In recent years, we fought
for and won paid training classes for homecare workers.''
Through the work of the union, you can now receive paid
training classes on topics such as CPR and caring for patients
with dementia and autism. What benefits are there to being a
Pennsylvania SEIU Healthcare member for both you and for those
for whom you provide care?
Ms. Orndoff. Well, it gives us a way to fight not only for
our rights, but for the rights of our participants. For
example, we currently have a bill here in the Pennsylvania
house. It's House Bill 2372, which not only helps not only is
looking to increase wages for participant-directed homecare
workers, but also for accountability measures that the agencies
and such spend a certain percentage of the money, that the
funds to be able--oh boy, I really screwed that answer up.
Sorry about that. It calls for accountability on the agency's
part that the funds are spent toward home healthcare workers'
wages and taking care of their participants.
The Chairman. Well, that I mean, that example of providing
those training opportunities should be more widespread than I
know it to be nationwide, so it's a good example of what we can
do, and I think that's important to point it out.
Tori, you've noted that your caregiving responsibilities
have affected your decisions about work. You made reference to
that your last--just in the last answer you gave. We know, and
this is a terrible understatement, but raising a family costs a
lot, and one of the fights that I've been engaged in this
battle is to point out corporate price gouging and what I call
greed, deflation. I didn't make up that term, but it's a good
description of what it is. Prices for food and household items
being jacked up by the very companies that got these big
corporate tax breaks in 2017.
Apparently, a lot of them didn't need the tax break because
they were going to jack up prices after it, and it affects
everything. It affects food, and housing, and gas, and you name
it, and a lot of it's just pure greed, and they are very angry
at me for saying that, but they better get used to it because
I'm going to keep saying it.
Childcare is another cost. That's just through the roof.
We've heard that today, and choosing a childcare provider has
significant effects on family finances. Tori, you said at one
point that you couldn't look for a job because you had no one
to be with your son because of that juggling you talked about.
You have exceedingly complicated mornings and well beyond the
morning, I'm sure, but your workday's interrupted each
afternoon so you can pick him up from school.
Can you talk more about the career decision or the
employment decisions you've had to make that were impacted by
the childcare needs that you have?
Ms. Snyder. Before I had Braxton, I was an executive vice
president of a multimedia company, and at a very young age, I
hit all of the big goals that you should have gotten, right?
I've won all the awards. I've done 40 under 40. I've gotten
this, I've gotten that. I've even testified before Congress,
and that's not me boasting, that's saying like I'm a capable
individual, but come the pandemic, and with Braxton, he was
just so little at the time, childcare was so expensive that
when he first started childcare, I could afford two days a
week, and so, I flexed my schedule, and I worked around, and my
mother was working at that time, full-time, and so, she could
sometimes pick him up, or I could pick up and drop off, but I
also had childcare, but I also had a friend who was able to
watch him in those gaps.
She had kids at home, too, so she was a stay-at-home mom of
three, and so, I helped supplement her income and she was able
to keep him if I had got stuck at work later, an event, or
things like that, and so, that was really helpful in those
early years, but once we hit the pandemic and the child centers
were closed, and then they reopened, and then it was like,
well, we're closed because of Covid, but you still had to pay
even if they were closed because well, they have to pay their
workers too, and people were sick, and you understand that.
One month I think Braxton went to childcare two days out of
the whole month because of Covid closures, and sickness, and
weather, but I still paid my $1,700 that month, but I took care
of him, right? I wasn't paid, and there wasn't a way to get
that money back or anything else, and so, I also made a lot of
hard decisions of being able to get him into quality childcare.
I paid a lot of money for him to go to those programs. He
did do a Pre-K Counts program one year, and it was really,
really fantastic for him, but he was trending higher than what
his classmates were, and they'd even said like, you need to get
him into another program. Intellectually, he's just so
advanced. If you want him to not be another statistic, if you
want him to have that growth and keep it catapulting, you need
to find another option for him, and so, made the really hard
decision of, okay, well I'm going to enroll him in this really
great preschool program, and that's when I had started my
business. I was a small business coach, owned an own business,
was a DEI consultant, and then also doing social media.
I was a contract worker, and at any time, I had six or
seven contracts going on at one time. It's exhausting, right?
Like, he would go to sleep and then you're still working, but
it was the only way that I could financially afford to provide
him the care that he needed.
In kindergarten, that was great, right? You're thinking,
yes, we're out of childcare. I don't have to pay this amount of
money every month, and then, you realize that, well, school
drop off is at 8:40. Work starts at 8:30, so there's already an
issue. Pickup is at 3:40, my workday goes five, so there's
another issue. Even if you took the bus home, it still drops at
my house at 4:15.
We're still looking at a gap of several hours of traffic
and commuting, and so, afterschool programs were available and
it was really great, but it was not affordable for us, and it
also was a lot of tossing back and forth of him and
overstimulation by the end of the day. A child on the spectrum
sometimes needs routine and quiet, and he excels best with
that, and so, it got to the point where I was coming home and
having to undo and regulate him because he was dysregulated for
so many hours, and then, also still having to work in the
evenings to match my hours that got missed because I was taking
him to and from work.
I'm appreciative of an employer that allows me that
flexibility because I know that that's not always the case, but
when it rains or it snows, and there's school cancellation, or
we have off because it's prom--not quite sure why first graders
need offer prom--but school board did not feel like that was
viable answer when I asked.
You work from home and luckily, I have that opportunity as
well, but I do economic development. I have to meet with
businesses, and people, and go to meetings, and so, I'm missing
a lot of the big conversations because I can't be there, but
also, I'm just really tired. There's some days I don't want to
people. I'm sure you've had that right after a long day of
hearings.
It feels like there's a constant chase happening and it's a
worry. I probably could be making more money. There's a lot of
jobs that I could apply for, but that would mean that I would
be bequeath to them 24 hours a day, and I'm already struggling
with the gaps that I have, so I can't do that, so there's a
real detriment for me for career advancement now and in at
least the next 10 years.
The Chairman. Delilah, how about in your circumstance,
either making a--because of caregiving responsibilities, making
either a career choice or even just an employment choice?
Ms. Picart. I have an agent and the agent sends me
auditions, or information from clients who are interested in
booking me either for commercials, or TV spots, and stuff like
that. Most recently, I had to turn down being a spokesperson
for an American college, which would've given me a nice five
figure drop because I did not have coverage. I would've had to
travel over there. It was in Bucks County. I would've had to
travel, drive over, overnight it, spend a day, and then drive
back. Or another night and come back. I had to turn that down.
Things like that.
Thankfully, my agent says, ``Okay. Here's the audition and
here's when it's filming. Here's when you would need to be
available.'' Unfortunately, lately, I have not been available
for those times. If they say, ``Hey, the week of August 5th,''
I think, ``No, I can't.'' My mother's companions are away and
rightfully so. They should have time to be away. My brother's
companion is having health issues, so he's unavailable.
There was a brief period of time where my fiance' was a way
to take care of his own daughter who was recovering from a
surgery, so I had to turn it down. I've had to turn down a
number of jobs in this past year that would've easily given me
an income of about $30,000, which is useful because I do have
my own bills, and I also supplement that to my mother's bills,
and the care for her and my brother.
If Pennsylvania could provide a supplemental income to
caregivers--it was so cool during the pandemic, how the
President at the time wrote those checks to all of us. Right?
It was helpful for me at that time. I would think caregivers,
especially the ones and those receiving care at this table, to
be able to look at their caregiver and say, ``Wow, look, here's
$1,000 for the work that you did this week, just this week.''
Isn't it great?
We could X, Y, Z. We could get a new chair or supplement
for Heather. We could provide you, Delilah, with unlimited
diapers--man, I go through so many diapers for both my mother
and my brother. You know, we could provide occupational therapy
for Braxton, you know, so he can play, and Tori can relax. Wow,
like, actually put your feet up. Isn't that a daydream that we
all have?
It's not a handout. It would not be a handout because what
I do, and what Tori, does and what Linda does, and what
Heather's people do, and what Tara does, it is work. I did not
go to school for it. I did not sign up to be a caregiver. I'm
not licensed, but you know what? I'm an expert in taking care
of my brother and my mother.
I could probably help out with Tori because I understand
what it's like to have a boy with autism, and Linda, I could
probably do something with your grandson, because I'm familiar
with that community, but I can't call myself an expert to them.
I could only call myself an expert to Eric and Vivian.
The Chairman. Thank you for reminding us about the impact
on the decisions a caregiver has to make about----
Ms. Picart. Excuse me, Senator, may----
The Chairman. Yes, sure.
Ms. Picart [continuing]. I add one more thing? It is so
important that the language includes siblings. There are a
number of sibling advocates who are now sibling advocates and
caregivers, and if you look at the language, it says ``mother,
father, relative caregiver.'' I've seen this at Rite Aid. I've
seen this at Best Buddies, and I've been the longest
relationship that my brother has in his entire life, and I will
continue to be until either I pass or he passes. Yet, there is
no literature anywhere that verbalizes and acknowledges the
work that a sibling does as a caregiver. I just needed to add
that.
The Chairman. Good point. Tara, I wanted to ask you a
question about the financial needs of American families in
terms of these caregiving costs that we've heard we've heard, I
should say several people have made a reference to.
We know that childcare is a huge expense for families
sometimes taking up. We've seen all kinds of data on this.
Twenty percent, I guess, in some states, higher among low-
income families. We also know that caregiving for an aging
parent can result in a significant loss of family income,
especially for women, as you and others have pointed out. That
the loss of work has an impact, as we just heard.
I spoke to, not too long ago, a woman from Scranton who
left her job that paid $80,000 a year, and took a more flexible
job at a hardware store that paid $28,000 so that she could
care for her mother. From your perspective, what are the most
important policies we should have in place to support families
who must care for their loved one and ensure that they're not
forced into poverty?
Ms. McGuinness. There's no such thing as unpaid care, so
people provide it.
The Chairman. Yes.
Ms. McGuinness. Just to kind of go through the list of
policies, we've heard a bunch of them around the table.
Compensate caregivers, unpaid caregivers. There
are mechanisms, and we know the U.S. Senate can do this
because it's been done at least once, and you have a bill to
take this further, but in 2021, Congress passed the American
Rescue Plan and raised the wages of millions of homecare
workers in all 50 states in a temporary way around Covid. Was
it enough? Absolutely not, but was it done, and so, it could be
done more? Absolutely. Similarly, in the same, you know, rescue
plan, the child tax credit was expanded vastly. This cut
poverty in half in a single year.
The evidence is fantastic. I know you know this. We stopped
doing it. It made a profound difference. A lot of that covered
the gap for childcare, you know, caregiver tax credits as well,
and you know, there is both a financial investment across the
board, childcare, paid family medical leave that's up here in
Pennsylvania that we came very close at the federal level. We
could come back to that.
I want to say a word, though. It is both about making
financial investments in early, middle of life, and long-term
care at a federal level. It also means we have to make these
things work. I think you heard, you know, the ability to have
medical records from 30 years ago transfer. You know, the
simple things like an application process.
Many, many people miss out on their tax credits, their
earned income tax credits. Twenty percent of people leave it on
the table because if you don't make enough money to pay taxes,
you don't have to pay taxes. Why would you have to pay taxes in
order to get your tax credit? And that is measurable. Cash for
households that has a two-generation impact.
This is a kind of set laundry list. Early education, long-
term care, paid family medical leave, and being in a feedback
loop where these policies really work. Where the call times,
the applications, aren't impossible to read, so it's both
investing the funds and making them usable.
The Chairman. Thank you. Heather, I wanted to move to a
question for you. You discussed reliance on paid caregivers as
well as the care provided by your family. As you noted in your
testimony, your parents are aging, and at some point in time,
they'll no longer be able to provide some of your basic needs.
You say in your testimony, ``worry every single day about
my future, what my future could look like.'' And you're
concerned that you might have to move to an assisted living
facility or other type of more institutional setting. What do
you need to ensure that you don't lose, and as you say, lose
what you made reference to, which is, and I'm quoting, ``a full
and vibrant life.''
Ms. Tomko. I think I might sound like a bit of a broken
record here, but the most important thing for me to keep my
life and for me to continue to live as full a life as I have
now is ensuring that paid caregivers are available and they are
compensated well enough that they can consider it a career.
You know, as I mentioned, my care is not challenging,
necessarily, but it is detailed. The small details matter into
just making me comfortable going through about my day, and so,
if I have to teach the details of my care to a new caregiver
every day or every week because of that 60-plus percent
turnover that you mentioned, I would be physically in danger of
being injured from someone who doesn't understand my personal
care needs, and emotionally and mentally worn down from having
to go through the same thing day, after day, after day, trying
to help someone understand.
If caregivers were more stable, if they were paid to
consider this a stable career, I would be able to have a
rotating schedule of maybe five caregivers who are able to grow
with me, learn with me, understand my care, and have that
relationship that works for both of us, because right now, like
so many of you already mentioned, the real experts of my care
right now are my parents, and that is not feasible long-term,
nor should it be. You know, I am 35. I would love to be able to
live on my own in the community. I lived in the dorms at
college, and loved it and thrived, but I can't live on my own
right now knowing that I might have to call my parents at 11:00
p.m., and saying, ``Hey, I'm so sorry. A caregiver called off,
and we tried everyone we could, and no one is available.''
My life is vibrant now, but could be even fuller, but it
feels like I can't wish bigger than what I have right now
because it feels like such an impossible ask, and making myself
smaller to be content with what I have now, and I love my
parents, and I'm so grateful for the care that they do offer
me, but I shouldn't have to be relying on them, and without
compensating caregivers for the value of the work that they do,
that will never be possible for me. Thank you.
The Chairman. Well, and your independence is important to
you like it is for everybody else, right? I know we're getting
close on time. I wanted to ask one more question to the whole
panel. This'll be what you might call the lightning round, in
the sense that, I hope, if you can, if you'd be willing, and
some of the other answers each of you gave, made reference to
kind of an action item list.
I think as a conclusion so that we can be reminded of what
our, my responsibility is, as well as any elected official at
any level of government--I'm not going to call out other levels
of government. I'm a federal official, so I'll put the burden
on the federal government for today, but we all play a role in
no matter what level of government, but if you could just
outline what you hope the U.S. Congress, the House and the
Senate, and the next administration would do to provide the
kind of policy agenda that would address some of the most
urgent needs, and maybe we'll start with Linda over here.
Ms. Orndoff. Well, I'd like them to just help us get the
resources we need to make homecare a viable occupation. I mean,
it is currently is with the low wages, no benefits, you know,
no retirement, or anything. People can't afford to do this type
of work, you know, when they can go to, say, a Target or
Sheetz, and make more money.
The Chairman. Yes.
Ms. Orndoff. Then they can be in a home healthcare worker
if we had the proper resources and we could make this a viable
occupation. That we would have backup when we need it like when
I got sick with the Covid or sick with, you know, Lyme disease.
I wouldn't have to worry that there's no one there to take care
of them, to feed them, or cleanup, or anything like that, or
get them to appointments and things. Basically, that's it. I
mean, we need resources to make it a legitimate occupation.
The Chairman. Linda, thank you. Tori?
Ms. Snyder. I think it's important for policymakers and
lawmakers to understand that they need to put their differences
aside. This isn't a Democrat thing. This isn't Republican
thing. This is about humanity and people, and I'm tired of name
crawling at a level of--just it seems that like our children on
the playground know rules better than the many policymakers do.
I think, putting ego aside and thinking; what do we need to
do to be able to provide quality of life and quality of care
for Americans? I think that you are seeing the detriments of
health, the social detriments that are happening to us, this
weight that is hitting us of just all of the worries that we
face leads to healthcare issues, which is a burden onto our
system, but also, the mental health issues, which is another
burden to society, and to the people, and to our systems.
I think the paid leave for all, the child tax credits, the
elder care, the care ability and services, and access to
affordable healthcare. These basic rights is why we elect our
officials, and I think that they need to remember that that's
what they're doing at the end of the day for us.
The Chairman. Tori, thank you. Delilah?
Ms. Picart. Recognition to caregivers, just like you would
recognize police, firemen, and EMS. Letting them have some sort
of license so we have that recognition. Providing free mental
health care to caregivers. I'm fortunate, like I said, I do
have a therapist, but sometimes talking to her twice a month is
not enough for me, and definitely wages. Living wages, or for
some of us, supplemental income so I can comfortably not have
to, you know, take from Peter to pay Paul. I can pay my bills
and take care of my family. Thank you.
The Chairman. Thank you. Everybody's doing their--making
their lists very quickly, and I know, Tara, you had provided a
list earlier. Anything you want to add to what you said earlier
or anything you want amplify?
Ms. McGuinness. To your colleagues, listen to families and
keep them in the loop as you design policies as you're doing
today. That means building solutions are not about one policy.
The same family is doing elder care and early care, and this
will take investment, real dollars that we need to spend across
the life spectrum, and the wages. We will not get quality care
until we have quality wages, and $13.42 cents is not
acceptable.
The Chairman. Yes. I mentioned--make one quick commercial
here for the question of revenues. You know, we often hear in
Washington, oh, well these are great things to talk about, but
there's no revenue, right? There's just no way to do it.
A big part of the reason why there hasn't been the revenue
is because we've made choices now for 40 years. When I say we,
I mean the Congress, over the last 40 years to have a tax code
which is rigged for the top, and that's where the revenue is,
right? When you do that decade after decade, it constrains the
revenue.
The good news here is we got a big opportunity in 2025. No
matter what the outcome of this year's election, there is going
to be a big tax moment. The biggest tax bill in probably 25
years, if not longer, and that is the moment where we're going
to make some fundamental choices about whether or not we're
going to commit revenue for caregivers, for families, for those
who need a break and need help, or whether we're just going to
do the same old thing, which is the very--we get much, much
wealthier, and big companies get these huge, and I would argue
obscene, and I use that word purposefully, obscene tax breaks.
There's not a big mystery here. There is revenue. If you
align the needs that families have with the values that should
emanate from that with your tax choices, so really going to
make the right choices in 2025 or not, and if we make the wrong
choices, it's not going to be another chance in 2026 or 1927,
and go forward a lot of years. Got to win that tax fight in
2025. It is a big, big moment for all these issues we talk
about, and I hope people bear that in mind when they're making
a voting decision.
Finally, Heather, we'll end with whatever you'd want to say
about policy.
Ms. Tomko. Sure. I think coming along with what you just
said, what I would really like people to remember is that my
life as a disabled person has value. The lives of the people
who care for me, those lives have value, and it's really
important that we do put money behind policies that add to the
value of those lives, and policies that see those lives as
having value, and for us is just to live lives that other
people already take for granted and without paying money, find
policies that support the direct care of workers, and policies
that support increased wages for caregivers, there's no way for
me to believe that people see the value in my life. Thank you.
The Chairman. Heather, thanks so much.
I want to thank Heather. I want to thank Tara, Delilah, and
Tori, and Linda for their testimony and the answers to
questions that they gave, but most especially, for sharing
their own experiences, the struggles of their own lives, and
that of their families, and of people that they interact with.
We've heard about so many challenges faced by caregivers
and those who need care. Each of our witnesses who told a story
about their own caregiving lives and their own stories have
overcome so much in their lives in ways that I can't even
imagine. I've never had to overcome the challenges that I've
heard articulated today.
To use a line that my father used many, many years ago, so
many stories that we've heard here today and the struggles in
their lives, the stresses in their lives, the challenges they
face each and every day, not intermittently, but each and every
day, could be could be encapsulated by saying that they have
led, ``quietly, triumphant lives.''
They've already had to overcome so much, and to triumph
over those challenges, and stresses, and horrific
circumstances. We're just grateful that they're willing to
share. I think in a word, it's a chronicle of sacrifices that
they've made sacrifices to care for their loved ones, including
leaving their jobs to become full-time caregivers, starting
their own businesses so they have adequate flexibility to
accommodate their caregiving schedules, and moving family
members closer in order to provide day-to-day care.
These efforts often go without recognition. They are in a
word, unheralded, and many caregivers are ``on the clock'' all
the time. Whether it's to help with finding high quality and
affordable childcare, or caring for an aging family member or a
relative with a disability, or sometimes all of the above. All
at once. As Linda said, perfectly, ``We can't take care of them
if we can't take care of ourselves.''
So, we're going to continue the efforts that I've
undertaken and others have undertaken to increase funding for
programs like Medicaid, home and community-based services, to
ensure that no one has to wait for the care that they need.
I'm also working to permanently expand both the child tax
credit and the child and dependent care tax credit, two
separate tax credits. One that's more broader in its impact
because it's a tax credit for families raising children, and
that family decides what they spend it for, mostly, in most
instances, food, but food, or rent, or childcare.
Then, there's a separate and distinct tax credit, the child
and dependent care credit. That's a tax credit just for
caregiving or for childcare. We know that caregiving touches
all of us, and the federal government, as I've said now,
multiple times, must do more. Must do more to support those who
need care and those who are our caregivers.
And when I say must do more, it starts with the tax code.
It starts with appropriations. It starts with making these
issues a priority, not an afterthought, not with what extra
money's left over when you gave all away the store to the top,
but making it a priority when the tax debate starts, and making
sure we win those tax and revenue battles. I want to thank all
of our witnesses, again, for contributing their time and
sharing their experiences.
The hearing record will remain open for seven days or until
next Wednesday, August the 14th. Thanks everyone for
participating. This hearing is adjourned.
[Whereupon, at 11:36 a.m., the hearing was adjourned.]
=======================================================================
APPENDIX
=======================================================================
Prepared Witness Statements
=======================================================================
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Prepared Witness Testimony
Heather Tomko
Good morning, Chairman Casey. Thank you so much for
allowing me to share my testimony today. My name is Heather
Tomko - I'm a 35-year-old woman and a lifelong Pittsburgher, a
graduate of both Carnegie Mellon University and the University
of Pittsburgh, and a current employee of Pitt as well. I'm also
disabled - I have a progressive, genetic neuromuscular disease
called Spinal Muscular Atrophy (SMA). I've never been able to
walk, and I've used a wheelchair since I was about two years
old.
Growing up with a disability like SMA means that my life
looks a bit different than most people's. I need help doing
most of the things people tend to take for granted - getting in
and out of bed, using the bathroom, taking a shower, getting
dressed, and even brushing my hair. That help has come in
various forms over the years. Up until college, my parents were
my sole caregivers, and I relied completely on them. When I was
accepted to Carnegie Mellon and decided to live in the dorms on
campus, my family and I had to figure out how I would get the
help I need while living away from home, and that was my first
experience with paid personal care attendants (PCAs). Since
graduating from college, I've moved back home with my parents
and my sister, who shares my disability, and have a mix of
unpaid care from my parents and paid care through PCAs.
I learned quickly while at college how much of an
adjustment relying on PCAs was going to be for me. Not only in
terms of having to explain and be comfortable with strangers
doing my care (though that was also new to me), but in terms of
the management of my PCAs schedules. I got my PCAs through an
agency, who coordinated the hiring and scheduling of my PCAs to
fill the hours I'd been allotted through my Medicaid waiver.
I realized that while the agency was in charge of my
schedule, I was ultimately responsible. If a PCA called off for
one of my shifts, which happened not infrequently, I was the
one without care if the agency couldn't find a replacement in
time. I was the one making frantic phone calls to the agency
every few hours checking in with them, and I was the one who
had to call my parents and ask my mom to spend the night with
me in the dorm when the agency wasn't able to find anyone in
time. All while also trying to adjust to college life, make new
friends, finish my homework assignments on time, and study for
exams. Nothing adds to your stress level quite like knowing you
have a midterm the next day, and not being sure if you will
have a way to get out of bed beforehand to actually go take the
exam.
This lack of stability with PCAs during my time at Carnegie
Mellon was a large part of my decision to move back home after
college. At least at home, I would have my parents as backups
already in the same place, and I wouldn't need to make any
11:00 p.m. phone calls after another last-minute call off. Over
the years, I have cobbled together a patchwork of care, luckily
finding a handful of consistent PCAs (though never enough to
actually fill all the hours allotted to me) with my parents
filling in the rest of the gaps.
Finding consistent care is an important distinction, and a
detail that is often overlooked. My care, while not overly
difficult, does require explanation, and training, and a little
bit of getting used to. When someone is putting me into my
wheelchair where I'll spend the next five hours in the same
position, it's important that I'm comfortable and supported
correctly while I'm there, and if I have a revolving door of
PCAs, rather than a handful of consistent people, it becomes
near impossible for me to have my needs actually met properly,
because by the time a PCA and I have settled into a comfortable
routine, they're already moving on.
While I have a patchwork system that is manageable for now,
I worry every single day about what my future could look like.
I'm 35 right now, and my parents are in their 60s. I'm
incredibly grateful that they're still able to lift me, and to
help me with the more physical aspects of my care, but I know
that this won't be the case forever - they're aging, and at
some point in the not-so-distant future, they're not going to
be able to care for me (and my sister) like they do now, and
I'm terrified what that will mean for me. If I can't find
consistent care, my only option would be to move into an
assisted living facility, and leave my full and vibrant life
behind.
While these are only my own personal experiences, I also
see them mirrored every day in my professional life. I'm the
Outreach Coordinator at the University of Pittsburgh's National
Rehabilitation Research and Training Center on Family Support.
In this role, I serve as the liaison between academia and the
larger family caregiving community. In my interactions with
both caregivers and people receiving care, I found that the
most common comments and questions I got were about how they,
as family caregivers, were shouldering the majority of care for
their loved ones, and how they were struggling to find and keep
PCAs. While we often look at "paid caregivers" and "unpaid
caregivers" as two different silos, both actually exist
intersectionally along the care continuum. Many family
caregivers are looking for PCAs for their loved ones as well -
not necessarily to replace their unpaid care, but to supplement
it - to allow family caregivers the time and space to care for
themselves, as well.
While this has been a challenge for years, I've found that
it's gotten exponentially worse following the pandemic - it's
gotten to a crisis level that I've never experienced before,
and I know that the problem is multifaceted, but it's clear
that one major issue is the stagnant wages for PCAs. I've
mentioned how pivotal getting this care is to me and my life -
without it, I could quite literally be stuck in bed all day -
but the wages PCAs receive do not reflect how critical their
services are. Someone can actually make more and have a higher
chance of growth and promotion by working at Target than they
can by working as a PCA. We've seen companies raising their
wages to entice people back into the workforce following the
pandemic, but I haven't seen that happening for PCAs. So, I'm
seeing what has been a long-standing issue now brewing into a
perfect storm of losses in the workforce with stagnant, non-
competitive wages, with no changes in sight.
Increasing wages to a competitive level for PCAs is long
overdue. I urge you to act on this before it's too late for me
and the thousands of others who rely on care to live our daily
lives. Thank you so much for allowing me the chance to speak
with you today, and to share my experiences and submit my
testimony.
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Prepared Witness Testimony
Tara Dawson McGuinness
"The [youngest grandson] is autistic, you know what I'm
saying. I can't take him everywhere `cause I have to hold his
hand 24/7. Even walking down the street, I can't release his
hand because he will wander off."
These are the words of Walter, a grandfather and sole
caretaker of two children in Philadelphia, whose perspective I
am honored to lift up at this hearing.
My name is Tara McGuinness. I am the Executive Director of
the New Practice Lab, a team based at New America, focused on
delivering better policy and public services for families with
young children. I am grateful to join you to talk about the
importance of focusing on the care needs of families.
My testimony today relies on both data gathered by our team
and the experience and expertise of people like Walter -
families who are part of our Thriving Families Project\1\, an
ongoing effort in multiple states, including Pennsylvania, to
listen to families and build a holistic picture of what enables
them, in their own words, to thrive.
---------------------------------------------------------------------------
\1\ New Practice Lab, New America, "Co-Designing a Thriving Family
Life", https://www.newamerica.org/new-practice-lab/blog/co-designing-a-
thriving-family-life/ "To date, we have conducted 4 co-design workshops
with 35 people from families with a wide variety of backgrounds and
experiences, including families from a variety of racial and ethnic
backgrounds, those that live in rural, urban, and suburban communities,
and have lived experience with a broad swath of social welfare programs
across the, and local levels."
---------------------------------------------------------------------------
At the New Practice Lab, we help policy makers build new
policies in a closer feedback loop with families - exactly what
we are doing today. We are so glad to be a part of this
important field hearing.
Unfortunately, at a policy level, too often we don't center
on the family experience. We often approach phases of life as
separate challenges: early childhood education and care, paid
family and medical leave, families members that are aging or
have a disability.
However, care needs - for children, for parents, a sibling
with a disability - often show up all at once for a family. If
we are raising young children, we might also be caregiving for
our parents. If we are grandparents, we might be unexpectedly
raising our grandchildren.
In Pennsylvania, more than 76,000 grandparents live with
grandchildren for whom they are responsible, and 47% of those
grandparents are in the labor force.\2\ At the other end of the
age spectrum, millions of youth and young adults provide care
for family members.\3\ Other families with loved ones with
disabilities have different care needs.
---------------------------------------------------------------------------
\2\ U.S. Census Bureau. "Selected Social Characteristics in the
United States." American Community Survey, ACS five-Year Estimates Data
Profiles, Table DP02, 2022, https://data.census.gov/table/
ACSDP5Y2022.DP02?g=040XX00US42
\3\ Armstrong-Carter et al. "The United States should recognize and
support caregiving youth", Social Policy Report, https://
srcd.onlinelibrary.wiley.com/doi/10.1002/sop2.14. Accessed July 31,
2024
---------------------------------------------------------------------------
I know this to be true. Like 47% of Americans in their 40-
50s, I have young kids and aging parents.\4\ Like more than 20
million American families, mine cares for someone with
disabilities.\5\
---------------------------------------------------------------------------
\4\ Kim Parker and Eileen Patten, "The Sandwich Generation Rising
Financial Burdens for Middle-Aged Americans", Pew Research Center,
www.pewresearch.org/social-trends/2013/01/30/the-sandwich-generation/.
Accessed August 1, 2024.
\5\ In 2019, out of 79.6 million family households in the United
States, 25.7% of them had at least one family member with disability.
25.7% of 79.6 million is around 20 million family households. Natalie
A. E. Young and Katrina Crankshaw, U.S. Census Bureau, Social,
Economic, and Housing Statistics Division Demographic Directorate, "The
Demographics of Disability in the Family: Prevalence, Characteristics,
and Implications for Financial Well-Being", https://www.census.gov/
library/working-papers/2023/demo/SEHSD-WP2023-22.html. Accessed August
1, 2024
---------------------------------------------------------------------------
Families cycle in and out of needing care. One in six non-
caregivers expects to become a caregiver within two years.\6\
---------------------------------------------------------------------------
\6\ U.S. Center for Disease and Prevention, "Caregiving", https://
www.cdc.gov/aging/data/infographic/2018/aggregated-caregiving.html.
Accessed August 1, 2024
---------------------------------------------------------------------------
It is too hard to raise a family and find care for loved ones
Today, in the United States we make it way too hard\7\ to
start and raise a family. Household costs go up precipitously
with the birth or adoption of a child, right at the same time
that wages typically go down.
---------------------------------------------------------------------------
\7\ Robertson et al., "Raising Young Kids in America Has Become
Hell, and the Government Should Finally Acknowledge That', New
Republic, newrepublic.com/article/167369/young-children-parents-
seniors-government-programs. Accessed August 1, 2024
---------------------------------------------------------------------------
Every year, about 130,000 babies are born in Pennsylvania.
More than 2,000 children are adopted.\8\
---------------------------------------------------------------------------
\8\ U.S. Department of Health and Human Services, Administration
for Children and Families,Administration on Children, Youth and
Families, Children's Bureau. "The AFCARS Report: Pennsylvania"
Estimates as of May 9, 2023. Accessed on July 31, 2024https://
www.acf.hhs.gov/sites/default/files/documents/cb/afcars-tar-pa-2022.pdf
and March of Dimes PERISTATS, "Births", Data for Pennsylvania,https://
www.marchofdimes.org/peristats/
data?reg=42&top=2&stop=10&lev=1&slev=4&obj=3&sreg=42. AccessedAugust 1,
2024.
---------------------------------------------------------------------------
Pennsylvania, like most states, has no state paid family
and medical leave program. When a new baby is born, parents are
on their own to figure out how to manage infant care and earn a
living.
Nationally, just 27% of workers have paid family leave
through their jobs to care for a new child or a seriously ill
loved one, and only 40% have personal medical leave through an
employers' short-term disability insurance policy, including
for pregnancy-related health and recovery issues.\9\ Access
varies dramatically by industry, occupation, and wage level,
among other factors, leading to dramatic disparities that place
the greatest burdens and risks on workers and families with
fewer resources.\10\ The majority (61%) of private sector
workers (making less than $14/hour) do not have paid sick time
for short-term illness related absences.
---------------------------------------------------------------------------
\9\ 9Vicki Shabo, "A Nation of Paid Family Leave Have- and Have-
Nots Characterizes the United States in 2023", New America, https://
www.newamerica.org/better-life-lab/blog/bls-family-leave-2023/ Accessed
August 1, 2024
\10\ 10Vicki Shabo and Hannah Friedman, "Health, Work, and Care in
Rural America", New America, https://www.newamerica.org/better-life-
lab/reports/health-work-and-care-rural-america/. Accessed August 1,
2024
---------------------------------------------------------------------------
Having a child is just the beginning. Being able to make a
living and raise kids gets even more challenging as school in
most communities doesn't start until kids are five and parents
need childcare to work. In Pennsylvania, there are nearly
796,000 working parents with children ages birth to five.\11\
The majority of them need childcare.
---------------------------------------------------------------------------
\11\ Sandra Bishop and Steve Doster, "$6.65 Billion: The Growing,
Annual Cost of Pennsylvania's Child Care Crisis", Council for a Strong
America,https://strongnation.s3.amazonaws.com/documents/1608/2735f9c4-
fa3c-4e39-8516-ed2de992b084.pdf?167760174
0&inline;%20filename=%22$6.65%20Billion:%20The%20Growing,%20Annual%20Cos
t
%20of%20Pennsylvania%E
2%80%99s%20Child%20Care%20Crisis.pdf%22. Accessed August 1, 2024
---------------------------------------------------------------------------
That care comes at a steep cost. In 2023, the average
Pennsylvania family paid about $14,000 for one year of center-
based child care - per child.\12\ That's 11.5% percent of the
median family income. There is wide geographic variation, with
the annual cost of center-based care ranging from around $8,000
in some counties to upwards of $18,000 in others.\13\
---------------------------------------------------------------------------
\12\ Child Care Awarer of America, "Childcare Affordability in
Pennsylvania",https://info.childcareaware.org/hubfs/
2023%20Price%20Fact%20Sheet/Pennsylvania%202023--Price%20of%20Care.pdf.
Accessed August 1, 2024
\13\ U.S. Department of Labor, "Childcare Prices as a Share of
Median Family Income by Age of Children and Care Setting", National
Database of Childcare Prices,https://www.dol.gov/agencies/wb/topics/
childcare/median-family-income-by-age-care-setting. The New Practice
Lab team has organized this information into an accessible spreadsheet
here:https://docs.google.com/spreadsheets/d/1iAsaBrWeLJ3X8mW--t2--
otJozvdoy3kC9/
edit?usp=sharing&ouid=113629679965876143693&rtpof=true&sd=true
---------------------------------------------------------------------------
-In Philadelphia and Cumberland counties it is on average
$14,078 for just one year of care.
-In Dauphin County, Allegheny County, Mercer County and
Washington counties it is closer to $13,772.
Affordability is only one piece of the equation though.
Child care staffing shortages mean there simply are not enough
providers to meet the needs of families seeking care. In a
recent survey, Pennsylvania providers responded that being
fully staffed would allow them to care for about 16,500 more
children.\14\
---------------------------------------------------------------------------
\14\ Start Strong PA, "Pennsylvania's Child Care Crisis September
2023 Survey Results", https://static1.squarespace.com/static/
5c2e545d0dbda3cf1389658c/t/661ff30ee875e904e6a8a384/1713369870722/SSPA-
Pennsylvania-Fact-Sheet.pdf. Accessed August 1, 2024
---------------------------------------------------------------------------
The cost of living for families with young children is
especially difficult, but meeting the care needs of a family
isn't only a challenge for families with young kids. Whether
because of a long term disability or a short-term medical need
(like recovering from cancer treatment), families need
flexibility, access to care, and support when they are
providing care to loved ones. 14% of people in Pennsylvania
have a cognitive, hearing, vision, or ambulatory disability, or
one that makes self-care or independent living difficult.\15\
---------------------------------------------------------------------------
\15\ United for ALICE (Asset Limited, Income Constrained,
Employed), "Financial hardship for people with disabilities:
Pennsylvania", https://www.uwp.org/wp-content/uploads/ALICE-in-Focus-
Disabilities-Pennsylvania.pdf. Accessed August 1, 2024
---------------------------------------------------------------------------
Parents and primary caregivers are in a tight spot trying
to put together a puzzle that balances affordability,
accessibility, and quality - all while earning a living.
Caring for each other as we age
Modern science has enabled us to live longer than at any
point in history - shifting our need for care dramatically.
Currently, Pennsylvania is home to 3.4 million older
adults, the fifth highest total in the country.\16\ By 2030,
one in four Pennsylvanians will be 65 or older. Most of these
seniors prefer to remain in their homes and communities instead
of living in an institution.\17\
---------------------------------------------------------------------------
\16\ Pennsylvania Department of Aging, "Aging Our Way, PA: A Plan
for Lifelong Independence", https://www.aging.pa.gov/publications/
MasterPlan/Pages/default.aspx. Accessed August 1, 2024
\17\ United Home Care Workers. "Where does the money go? Funding
Accountability for Pennsylvania's For-Profit and Private Equity-Owned
Home Care Agencies" https://uhwp.org/wp-content/uploads/2023/04/
REPORT%E2%80%94Where-Does-the-Money-Go-2023.04.05.pdf. Accessed August
1, 2024
---------------------------------------------------------------------------
To meet this demand, Pennsylvania will need to recruit
275,000 new home care workers in the next six years, but
poverty wages for caregivers and challenging working conditions
mean that today these roles have an annual rate of turnover of
64%.\18\
---------------------------------------------------------------------------
\18\ ibid
---------------------------------------------------------------------------
Work, the carers and the caring workforce
Here in Pittsburgh, child care workers make an average of
$13.42 per hour, which is about $28,000 per year.\19\ If they
support a child, they would need to come up with almost $40,000
more to have a modest living standard.\20\ Demand for child
care workers exceeds the size of the existing workforce. The
industry continues to struggle from the impacts of the
pandemic. Jobs are available, but hiring and retaining folks is
a particular challenge in the child care industry.\21\ A key
driver of this scarcity - wages are far too low, and because
this work force is largely women and largely women of color
these wage inequities have rippling effects on our communities.
---------------------------------------------------------------------------
\19\ U.S. Bureau of Labor Statistics, Occupational Employment and
Wage Statistics for Pittsburgh, PA, May 2023. $13.42 per hour x 40
hours per week X 52 weeks = $27,913.6 annual wage. https://www.bls.gov/
oes/2023/may/oes--38300.htm#39-0000. Accessed August 1, 2024
\20\ Economic Policy Institute's Family Budget Calculator, January
2024. Data are in 2023 dollars, https://www.epi.org/resources/budget/.
Accessed August 1, 2024. For an adult to support a child with a modest
living standard, a worker in the Pittsburgh metro area needs $67,418
annually. The gap is $67,418 - $27,913.6 = $39,504.4
\21\ The Center for American Progress, "The Child Care Sector Is
Still Struggling To Hire Workers", https://www.americanprogress.org/
article/the-child-care-sector-is-still-struggling-to-hire-workers/.
Accessed August 1, 2024
---------------------------------------------------------------------------
There are and there will need to be millions of care jobs,
especially home care jobs, that pay living wages. Today there
are 3.7 million home care workers, according to BLS data.\22\
In fact, home health and personal care aide is the most common
job in the United States.\23\ Still, the need for home care
outpaces the availability of people to provide that care.
Employment of home health and personal care aides is projected
to grow 22 percent from 2022 to 2032, much faster than the
average for all occupations. About 684,600 openings for home
health and personal care aides are projected each year, on
average, over the decade.
---------------------------------------------------------------------------
\22\ U.S. Bureau of Labor Statistics, "Occupational Outlook
Handbook: Home Health and Personal Care Aides", https://www.bls.gov/
ooh/healthcare/home-health-aides-and-personal-care-
aides.htm#::text=in%20May%202023. -
,Job%20Outlook,on%20average%2C%20over%20the%20decade. Accessed August
1, 2024
\23\ U.S Bureau of Labor Statistics, "Charts of the largest
occupations in each area, May 2023", https://www.bls.gov/oes/current/
area--emp--chart/area--emp--chart.htm. Accessed August 1, 2024
---------------------------------------------------------------------------
Policy hasn't kept up to meet the needs of our lives
In just a few generations we moved from a typical family
having one person at home caring for the children to most
American kids being raised by two working parents, and more and
more often those working parents are also providing some level
of care for their own aging parents.
Every year, unpaid family caregivers provide about 80% of
care services to their communities - a $600 billion US dollars
worth of contribution.\24\ Women are more than two times more
likely to be giving this unpaid care. Inadequate child care
options cost Pennsylvania $6.65 billion in lost earnings,
productivity, and revenue.\25\ This is a structural economic
issue, not just a personal one.
---------------------------------------------------------------------------
\24\ Reinhard et al., "Valuing the Invaluable 2023 Update:
Strengthening Supports for Family Caregivers", AARP, https://
www.aarp.org/pri/topics/ltss/family-caregiving/valuing-the-invaluable-
2015-update/. Accessed August 1, 2024
\25\ Sandra Bishop, and Steve Doster, "$6.65 Billion: The Growing,
Annual Cost of Pennsylvania's Child Care Crisis", Council for a Strong
America,
https://strongnation.s3.amazonaws.com/documents/1608/2735f9c4-fa3c-
4e39-8516-
d2de992b084.pdf?1677601740&inline;%20filename=%22$6.65%20Billion:%20The%
20Growing,
%20Annual%20Cost%20of%20Pennsylvania%E2%80%99s%20Child%20Care%20Crisis.p
df%22. Accessed August 1, 2024
---------------------------------------------------------------------------
We have experienced dramatic shifts in how we live, and
while we've made important advancements in our physical
infrastructure to keep pace with our economy, we have not done
the same for the care infrastructure that equally supports our
families and our workers.
This isn't an impossible dream, we know what works
Nearly all countries around the world, and even 13 states
across America, have paid leave policies that support families.
We have significant evidence demonstrating the positive impact
these policies have across economic, health, and social
outcomes.\26\ Making caregiving a legislative priority need not
be partisan - 82% of voters support making it easier for people
to care for their loved ones.\27\
---------------------------------------------------------------------------
\26\ Vicki Shabo, "Rural Pennsylvanians Must Travel Long Distances
to Hospital-Based Health Care", New America,https://www.newamerica.org/
better-life-lab/blog/rural-pennsylvanians-must-travel-long-distances-
to-hospital-based-health-care/; Kathleen Romig and Kathleen Bryant, "A
National Paid Leave Program Would Help Workers,Families", Center on
Budget and Policy Priorities,https://www.cbpp.org/research/economy/a-
national-paid-leave-program-would-help-workers-families; Addati et al.,
"Care at work: Investing in care leave and services for a more gender
equal world of work", International LabourOrganization,https://
www.ilo.org/publications/care-work-investing-care-leave-and-services-
more-gender-equal-world-work. Accessed August 1, 2024 Washington Center
for Equitable Growth. "What does research say about care
infrastructure?"https://equitablegrowth.org/wp-content/uploads/2021/04/
041521-care-infrastructure-fs.pdf. Accessed August 1,2024
\27\ Morning Consult on behalf of Pivotal Ventures and BPC Action,
"Voter Sentiment on Caregiving in the U.S.", https://bpcaction.org/wp-
content/uploads/2024-Caregiving-Poll-Results.pdf. Accessed August 1,
2024
---------------------------------------------------------------------------
Thich Nhat Hahn said, "Caring is the bridge that connects
us to one another." Today, we are in deep need of more
connection and policies that enable us to care more deeply for
each other. This hearing is a step on the path for federal
policies to anchor into the voices of what families are asking
for: policies that support them through all the moments of
their lives that require care.
****
Attachment: Care Learnings from New Practice Lab Thriving
Families Project (PA)
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Prepared Witness Testimony
Delilah Picart
Good morning, Chairman Casey. My name is Delilah Picart.
I'm from New York City, yet I've called Pittsburgh, PA my home
for twenty years. My professional career as a working local
actress has allowed me to appear in films and commercials, but
currently I have a job I didn't apply for, and I can't quit. I
am a caregiver to my brother and mother. I moved them here from
East Harlem in April 2023 when it became glaringly apparent
that Mom couldn't take care of herself or my brother anymore.
My brother Eric has Fragile X Syndrome and Severe Autism.
He is two years younger than me, and I always anticipated
taking care of him. My mother Vivian has moderate dementia, and
I didn't think I would be taking care of her. My father Enrique
died in 2011 from complications of Alzheimer's disease. He was
the parent I was most similar to, and the parent I loved most.
I have a complicated relationship with my mother. She
believed in tough love parenting, which I have now come to
realize is entry-level emotional abuse and manipulation. From
six years old to 12 years old, she would threaten to hit me,
and often would chase me to my room with a shoe in her hand.
She once poured a pitcher of ice water over my head. I was
eight years old. When I was a teenager, I would ask her why
Eric was different, why did he get special treatment. She
mocked me. As I got older still, and with therapy, I realized I
didn't like my mother as a person. She was jealous of me and
petty. She would gossip. She would criticize me in a spiteful
way. We are fundamentally different people. Once, I confronted
her about chasing me and scaring me when I was a child. "You
probably deserved it," was her retort. I have actively and
consciously done all I can to parent my daughter with love and
affection.
I would go and visit my mother and brother at least three
times a year. Never for more than five days. I couldn't stand
her tv addiction, the way she ignored me for the sake of some
predictable tv drama. She would answer the phone, "Not now, Dr.
Phil is on," then hang up on me. I stopped sharing projects I
was working on because I didn't want to hear her criticize and
judge me.
Before I moved my family here, I had received a phone call
from my mother in July 2022. She said she was having a hard
time. She could no longer do simple math. She wanted to get a
Power of Attorney. I decided to visit my mother and brother
once a month, for a weekend. Over the next four months, I saw
my mother sit in her armchair and watch tv all day long. She
would forget to take Eric to doctor appointments, neglect to
trim his nails. Eric would search the kitchen for food, usually
molded bread Mom had hidden from Eric. She no longer cooked;
all meals were take-out. Her refrigerator was packed with
containers of food, most of it weeks old. She had bags of
liquified lettuce, molded vegetables, soft green potatoes, old
bags of bacon, and numerous jars of parmesan cheese. She
complained that her washing machine no longer functioned, she
needed a new one. She had piles of clothes on the floor; she
had forgotten if they were clean or dirty. Her pill box was
mostly full, she had only taken her medication on Tuesday (it
was Friday). She neglected to clean Eric's room. I found it
dirty; Eric would purge on whatever food he found and then
vomit. Since Mom stopped speaking to Eric, he wouldn't tell her
he had made a mess. The four-story, single family brownstone I
grew up in had become dark, foul-smelling, dusty, and loud. The
volume on the television had the ladies from the View arguing
and shouting. It hurt my ears. We signed a POA in New York in
November 2022.
By January of 2023, I began visiting twice a month. Mom was
becoming aggressive. Eric had dark circles under his eyes. Each
trip I would empty out the refrigerator of rotten food. The
weekly meal service my fiance' Todd purchased for my family
would go unopened and rot. She would sit in her chair and mock
me. "Lilah thinks I have bad food!" she would proclaim to a
visiting neighbor, then throw her head back and laugh. My anger
would bubble. I bought fresh fruit and vegetables for my
brother. I would prepare dinner in the kitchen and try to
salvage a clean plastic container from the closet. Mom would
eat a little. She didn't like the vegetarian meals I made. Eric
would have seconds. I asked my family members to help pack her
up to move, with a target date of August.
I had access to Mom's checking account. One day when I was
back home in Pittsburgh, I checked on the accounts, making sure
certain bills were paid. There was a debt of $10,000. My
stomach knotted. The phone conversation I had with my mother
was frustrating and useless. She had no recollection of taking
that money out, or where it was. I had visions of a stranger
approaching my mother, forcing her to take that money out, or
worse, someone mugging her. It was later revealed that she had
withdrawn the money from her checking, and quickly deposited it
into her Home Equity Loan, which I did not have access to.
Within two weeks, I arranged for her and my brother to move out
of the brownstone. That was April 2023.
As a caregiver to two individuals with very specific
different needs, I am perpetually and eternally exhausted. I am
mentally, emotionally, physically, and psychologically tired. I
don't have the luxury nor the monetary fluidity to take a
break. I had no idea what I was getting myself into when I
decided to bring them both here. Yet, I was the only one
capable of making a radical change for the betterment of them
both. The only one to recognize that my mother had (at the
time) undiagnosed dementia, and that my brother was starving
and underfed and miserable. Not the nosy neighbors nor her own
brother who lived across the street.
As their primary caregiver, I manage their daily care,
which includes: pill management (distribution, refill, and pick
up); meals (three times a day, seven days a week; five days a
week I cook in my house and then pack it and take it over);
laundry (once a week, but lately daily [I'll discuss this
later]); garbage disposal; transportation (taking Viv to
Vintage Senior Center five days a week); dressing (Viv often
sleeps in her day clothes); coordination and scheduling of
companions; cleaning the apartment (washing dishes, vacuuming,
sweeping, bathrooms); grocery shopping as needed (toiletries,
paper towels, bath tissue, etc.); scheduling doctors'
appointments (quarterly); personal grooming appointments (bi-
monthly); bathing reminders.
My family lives in a two-bedroom, two-bathroom apartment
four blocks away from my house. It was decided very quickly
that they could not move in with me and my fiance' Todd. Mom
had difficulty going up and down stairs, and the idea of
hearing the tv 20 hours a day; not an option. It was one of my
first techniques of self-care: boundaries. Mom had a very hard
time adjusting for the first six months. Almost every day, I
would arrive in the apartment and find all the items from the
kitchen or the linen closet on the dining room table. Sometimes
there would be cardboard boxes in the living room. Many times,
she would go on Eric's computer tablet and look up "Man with a
Van Pittsberg (sic)". She was getting calls from neighbors
asking her when she was coming back, or saying her phone number
was disconnected. She accused me of hijacking her, of trying to
kill her. She called me sneaky. Many times, she would call my
cell repetitively, six or seven calls withing 10 minutes,
yelling into the phone, usually after 10 p.m. I would often
power my phone off by 8:30 p.m, another self-care boundary.
I found a woman companion for Vivian. She spends time with
her three days a week. I pay her out of pocket. I learned the
term "masking"; a behavior that is practiced by a person with
dementia when they are confused by a situation or what is being
said to them. They can carry on whole conversations in vague
terms because they are cued to react to certain words, tones,
mannerisms, and expressions. Vivian gets along beautifully with
her companion, and she is well liked at her senior center. I
would get the angry Mom, belligerent Mom, mean Mom, usually
after 2pm. With the supervision of her Pittsburgh doctor, I got
my mother on atypical antipsychotics after she threw a computer
tablet at me and missed. It has calmed her down, but it has
also given her frequent urination. I threw away all her
underwear and she now only wears pull up adult diapers. I say a
little mantra before I see my mother now; Grace, Forgiveness,
Patience, Acceptance, Compassion, or GFPAC. If I forget a word,
I know that's the one I need to focus on with her.
My brother was very happy with the move. He was getting
three meals a day and healthy snacks. I introduced him to red
peppers and avocado toast and lemonade. He no longer ate whole
loaves of bread. He no longer slept in a bed of dried vomit.
But I couldn't be with him all day long. Eric was receiving
services in NYC, but he was ineligible in Pennsylvania until he
had legal residency for six months. Even then, I had to show
medical records from over 30 years ago describing and
diagnosing his dual disability. By January, he had a very
helpful case-worker. His Individualized Support Plan declared
him an emergency case because he was living with his mother who
was formally diagnosed with moderate dementia.
In the interim, I found a young man to be his companion.
Again, I paid out of pocket. They would drive around, listening
to music, sometimes going to the museum. When I did have time,
we would go to the movies, yet when I brought him home, Mom
sometimes had soiled herself, forgetting to get up when she got
the urge to use the bathroom. One time I entered the apartment
and was met with the smell of something burning. I found two
charred eggs in the kitchen trash bin. Mom was hungry, tried to
make boiled eggs, forgot the pot on the burner, and had boiled
the water to nothing, leaving the eggs to blacken. I removed
the pot. Another time, she had made toast only to forget there
was a burnt piece already in the slots. I removed the toaster.
Eric and I had a routine. He would greet me in the living
room of their sparse apartment. I would apply a nail lacquer to
his toenails (he had an untreated nail fungus, something else
our mother had neglected) he would wait until "Kelly and Mark"
tv show, then he would put on his shoes and go downstairs and
sit in the lobby. He would people watch most of the morning and
some of the afternoon, until Mom would return from the senior
center by 2pm. Then, he would wait for me in the lobby. In the
Spring, he would be outside, in the green space or on the
corner of the church across the street. One day in June, he was
behaving in an aggressive manner, acting belligerent and
obnoxious. I had never seen or heard Eric behave this way. He
started to wander and refused to go into the apartment. This
became a weekly behavior. I consulted his doctor and placed him
on the same atypical antipsychotic medication that Vivian is
on. His behavior is mostly back to normal. As of July 3rd, he
now arrives on my porch by 5am. He is wet, because he
unfortunately has soiled himself (thus, the daily laundry).
After he has changed into clean clothes (I have a few items
because of his frequency) we have tea and coffee in my
backyard. We make up stories about the birds. Sometimes, we
walk my dog, Mango, and count the rabbits. I love my brother
immensely.
Eric's sudden unpredictable behavior has made Todd take
lead and contact his supports coordinator/case worker. The
emphasis of emergency was mentioned again. We finally toured a
few respite places for Eric, with the hope of making it
residential. Eric is looking forward to the change.
When I am asked, "How are you?" I give the rote, safe,
bland reply, "I'm fine, everything is good." With my close
friends and few family members, I'm honest. I'm sad or angry,
or good, in this moment. I'm tissue paper thin. I'm spent. I'm
struggling. I just can't today. I wish it would end. I need a
change. I'm fortunate; I have a therapist, a support group, a
weekly session with a trainer at a gym. Todd takes meals over,
my college bound daughter pitches in as asked. I've had a very
rich full life with highlights and low points. I watched the
Towers fall from two miles away, I've had four car accidents,
I've had a stalker terrorize me, and I've had my father go
missing for 34 days. This is the most challenging event I've
ever experienced.
In an ideal world, caregivers would for receive a public
recognition, just like military personnel or EMT. A caregiver
would be easily identified on a license. A hotline would be
available to answer questions and provide urgent support (i.e.,
cleaning service, laundry service, meal delivery,
companionship). A caregiver would be granted a parking pass to
go into the disabled parking spots at the grocery store,
hospitals, etc. State programs could provide college credit to
graduate students in the social services department, and have
said students provide handson companion care to people with
intellectual /developmental disabilities. Supplemental income
would be provided to caregivers with more than one individual
in their care, and requirements would include people with all
forms of dementia, not exclusively for people who are
incapacitated and home bound. Chefs would be incentivized to
prepare healthy meals for people with disabilities and
dementia. Service agencies would receive more money to have
more staff and more respite housing, so "emergency" means
immediately, not eight months. Finally, the licensed caregiver
could go to a hotel and receive a spa treatment, complimentary
dinner, and a few nights in the best room. I would love to have
a full night's sleep, and maybe sleep until 7am.
Thank you for your time and attention.
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of giving Across the Lifespan"
August 7, 2024
Prepared Witness Testimony
Victoria Snyder
Good morning! I am Tori Snyder, a single mom to a terrific
son, Braxton, who is about to start first grade. We live here
in Pittsburgh and I'm a proud member of MomsRising.
I want to start by saying thank you, Senator Casey, for
organizing this hearing and for all you do to improve support
for caregivers. It truly means the world to moms like me. I
appreciate the chance to share my family's story.
I am a sandwich generation mom with sole physical and
financial responsibility for my son. Over the past several
years, I've also provided care for my mother and my late
grandmother.
Juggling care for a young child and my aging relatives has
been an enormous challenge - financially and emotionally. These
challenges are much worse because lawmakers have failed to
ensure working people can access paid leave and quality,
affordable child care and elder care.
The beginning of the pandemic was an especially hard time
for my family. During COVID, Braxton was diagnosed on the
autism spectrum. He needs occupational, speech, and behavioral
therapy each week. My grandma got COVID and spent months going
in and out of the hospital. My mom also spent time in the
hospital. I had no money coming in as I lost my job when COVID
happened and couldn't even look for a job because I had no one
to watch Braxton. It was an extremely scary time, filled with a
lot of worries about what tomorrow would bring, because of the
unknown, and needing flexibility with my schedule for Braxton's
needs, I started a business, Self-Care Senorita, and worked as
a small business coach and DEI consultant.
During all this, my biggest fear was what would happen if I
got COVID, or worse, an injury that would cause me to not be
able to work. I couldn't get sick, and I couldn't get hurt
because if I did, I wouldn't be able to work - and then what
would happen to my family? Those what-ifs haunted me every day.
Thankfully, Braxton's preschool finally reopened. Having
child care again was a relief and allowed me to work more
hours, but it cost $800 per month - a big portion of my take-
home pay.
Last year, Braxton started kindergarten, and I took a full-
time job so he and I could have medical benefits, but I'm still
struggling with child care outside of school hours. At first, I
tried enrolling him in an after-school program, but that
program was expensive and ultimately, we just couldn't afford
it. Instead, I interrupt my workday each afternoon to pick him
up from school, which is stressful. In order to get my work
hours in, I log in before I take him to school, pause, take him
to school, work, pause again, get him from school and then work
hours in the evenings; it's exhausting trying to manage it all.
My new job also does not provide paid leave. I still worry
about what would happen if my mother or son were to be sick. I
have to save all of my paid time off for a what-if scenario
instead of using it for vacation time with my family or even
for my own sick days.
Unfortunately, I know so many parents and caregivers can
relate to these challenges. Here in Pennsylvania, about two-
thirds of us don't have access to any paid leave through our
employers, to care for our kids, ourselves, or our aging loved
ones. About 60 percent of us live in child care deserts - and
for kids under 5, care costs nearly as much as public college
tuition.
These challenges have limited my income and my career
opportunities - and I know so many moms who can say the same.
When working people like me can't fully utilize our skills,
that's bad for businesses and our overall economy.
As I've juggled these responsibilities over the years, I
often feel like I'm running in 1,000 directions at once.
Sandwich generation caregivers like me are struggling with
burnout and exhaustion. I joined MomsRising because I know the
only way we'll see progress is if we all raise our voices. I
will never stop using my voice to tell lawmakers to invest in
the care infrastructure working families need, with paid leave
for all, affordable high-quality child care, elder care, and
disability care, and an expanded Child Tax Credit. Senator
Casey, thank you for having our backs in this fight.
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Prepared Witness Testimony
Linda Orndoff
Hello Chairman Casey. My name is Linda Orndoff. I am a home
care worker from Coal Center, Pennsylvania. I take care of my
elderly mother and my oldest grandson who has autism.
I am a participant-directed home care worker. This means I
work directly for my participants, my mother, and my grandson,
rather than through an agency. This type of care allows the
participant to direct their own care and to choose who works
for them. A lot of times, like in our situation, this means
family members. They choose people who they know and are
comfortable with, rather than whomever an agency sends.
Nevertheless, whether you are participant-directed or an
agency worker, doing home care work is a big sacrifice. When I
was asked to come here today to speak to you, I was told to
just tell my story. I want to share what it is like to be a
home care worker, but to make you understand what a home care
worker goes through you need to know why the situation is like
it is, because of poverty wages and no benefits, we have a huge
crisis in the home care industry. Tens of thousands of home
care workers must depend on state and federal assistance
programs, like food stamps, Medicaid & sometimes cash
assistance just to live.
In our country, there is only one caregiver for every six
people who need and want care and to make it possible for them
to be able to remain in their homes. Without enough home care
workers, many people are being forced into nursing homes and
assisted living facilities as they cannot find caregivers to
keep them at home. In 2021 the annual turnover in the care
workforce was 64% and it is only getting worse. It is getting
worse because most potential caregivers are unable to do this
work when it pays so little and offers no benefits or security.
In my case when my mother and grandson began needing my
care full time, I had a big choice to make, put them in a home
or quit my job. I chose them. After that, everything about my
life changed. When I had to quit my job, I took a huge pay cut
and suddenly I had to figure out how to live on poverty wages.
I am currently making $13.52, the same hourly wage I made back
in the late 80's - early 90's. I could barely live on those
wages then, and I certainly can't live on these poverty wages
now. When I chose to take care of my family and stop working, I
no longer had health insurance, paid sick time, paid vacations,
or any retirement benefits.
My mother and grandson depend on my care 10 hours a day,
seven days a week. My mother has polycythemia vera which is a
rare blood disorder that makes your blood too thick and can
lead to strokes and organ damage. She also has chronic kidney
disease. She is also senile and has some dementia. She gets
angry a lot and is very defiant, mostly towards me. We live in
the country, on four acres, and she likes to wander away a lot
(mostly tracking her cat). Two summers ago, she disappeared
from me, and I couldn't find her anywhere. I was about to call
911 when I heard a noise at the top end of the property. I
found her in weeds up to her waist, in bedroom slippers, trying
to pull old lumber with rusty nails in it that my brother-in-
law had stacked there to burn. Now I have video cameras set up
everywhere to track her. Last summer she fell in the front yard
about 100 yards from the house, looking for the cat, and she
couldn't get up, so she was crawling up through the yard. She
lets the cat out the front door and immediately goes to the
back door and starts calling her to come in.
My mother likes to get up in the middle of the night and
rearrange all the cupboards in the house. Last year when the
overflow on the bathroom sink rusted out and started leaking, I
told her I was going to have to replace the sink, but she
decided it was the drainpipes instead, so she took a hammer and
fixed them. Boy did she ever. On top of all of that, she is
totally deaf, even with her hearing aids in. This makes
communication with her incredibly difficult. I have tried
several voice-to-text programs, but they screw up more than
they work, so I have to write lots and lots of notes. I could
tell you a lot more stories but suffice it to say she keeps me
very busy.
In 2014, shortly after I took guardianship of my oldest
grandson, he was diagnosed with Asperger syndrome. Asperger
syndrome is a previously used diagnosis that is on the autism
spectrum. He also suffers from chronic depression and obesity.
In 2019 he and I started a walking program, and he lost over 60
pounds in three months. I was very proud of him.
Unfortunately, my mother's mobile home that they lived in
caught fire. It was a total loss. I was able to get them a
newer, manufactured home to replace it, but everything was
reliant on me and by the time I got everything up to the newer
codes and got the house set up and them back home he had put
almost all the weight back on. Since then, with my mother's
further decline, it has been very difficult for me to be able
to leave the house. My grandson's weight has continued to
escalate, and I worry every day about his health, which is
starting to decline.
I am very active with my union SEIU/United Home Care
Workers of PA. In recent years we fought for and won paid
training classes for home care workers. These classes teach
home care workers CPR and safety training, which I have
completed. They also offer classes in working with dementia and
autism patients, that I would love to take. I feel they would
help me in dealing with the day-to-day tasks of taking care of
my mother and grandson. However, these are both 8hour courses
and while they are paid training, when you have no one to cover
for you it is very difficult to get them done.
As a participant-directed worker, I do not have the same
collective bargaining in PA like other workers. This needs to
change so we can fully advocate for ourselves. In states where
home care workers have collective bargaining, they have won
important victories like healthcare and living wages.
Vecause of the workforce crisis in our industry, it is
nearly impossible to get backup care. If I get sick there is no
one there to take care of them. A couple of years ago when I
caught COVID I was completely down for five days. My older
sister who can sometimes help me was in Florida on vacation and
there was no one to feed my mother or grandson. This year in
May I was bit on the neck by a spider. I got very sick for
almost a week, but I managed to keep working. I don't have
health insurance, so I didn't go to the doctor. After a week I
started to get better and then I got sick again. I had a rash
on my neck that was spreading that I had attributed to the
spider bite. Then the pain started, and it got so bad I went
from wondering if I was going to die to hoping that I would. I
finally went to a doctor even though I couldn't afford it. I
was eventually diagnosed with stage three Lyme disease, but if
we had health insurance this never would have progressed to
that point.
I would like to be able to tell you, other than the fact
that bugs seem to like me, that my story is a unique one, but
it is not. In my time in the union, I have spoken to a lot of
workers who work 90 and even 100 hours a week. I have listened
to the story of a young woman from Philadelphia who after
working a full day taking care of her elderly diabetic mother,
she then loads her in a car, even in the dead of winter with
her blankets and medicines and drives for door dash all night
to keep a roof over their heads. I have heard stories from
workers who have contemplated suicide from depression over
facing eviction from their homes.
We all know home care workers save the system, and
taxpayers, tens of thousands of dollars per year caring for
folks in their homes over putting them in nursing homes or
assisted living facilities, and that these folks have better
overall health outcomes, but we need to come up with a plan for
how to get caregivers out of poverty. Otherwise, there is no
way that we can build a sustainable home-care system, because
we can't take care of them if we can't take care of ourselves.
=======================================================================
Statements for the Record
=======================================================================
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Statement for the Record
Testimony of American Psychological Association Services
On behalf of the American Psychological Association
Services (APA Services), please accept the following written
comments for the consideration of the Senate Special Committee
on Aging for its Field Hearing titled "From Infancy to Aging:
The Effects of Caregiving Across the Lifespan". APA Services is
the companion organization of the American Psychological
Association, which is the nation's largest scientific and
professional nonprofit organization representing the discipline
and profession of psychology, as well as over 157,000 members
and affiliates who are clinicians, researchers, educators,
consultants, and students in psychological science. Through the
application of psychological science and practice, our
organization's mission is to have a positive impact on critical
societal issues.
Mental Health Impact of Caregiving
APA Services applauds this Committee's focus on the mental
health of caregivers. In 2021, an estimated 38 million family
caregivers provided some form of unpaid care to an adult
experiencing permanent or temporary limitations in their
ability to perform everyday activities of living like mobility,
eating, or bathing.\1\ The specific nature of the assistance
furnished by caregivers varies by the nature and degree of the
person's condition.\2\ For example, individuals recently
discharged from hospital settings may need caregivers to assist
with adherence to post-discharge protocols like medication or
diet. Older adults are also more likely to experience
conditions that result in fluctuating and potentially
diminished capacity for decision making, namely post-operative
delirium and other neurocognitive disorders, which can
necessitate caregiver assistance with daily activities
including managing finances or use of prescription medications.
Those with disabilities may require caregivers to assist with
various activities of daily living (ADLs) or transportation.
People with serious mental health needs may require caregivers
to monitor their well-being and safety. In addition to these
direct care tasks, many caregivers also assume a care
coordination role that could include addressing problems with
health insurance coverage or communicating with multiple
providers about implementing plans of care.
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\1\ AARP Public Policy Institute (March 2023). Valuing the
Invaluable: 2023 Update. https://www.aarp.org/content/dam/aarp/ppi/
2023/3/valuing-the-invaluable-2023-
update.doi.10.264192Fppi.00082.006.pdf.
\2\ Reinhard, Susan, Heather M. Young, Carol Levine, Kathleen
Kelly, Rita Choula, and Jean Accius. Home Alone Revisited. Washington,
DC: AARP Public Policy Institute, April 2019 https://doi.org/10.26419/
ppi.00086.001.
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Through their unreimbursed efforts, caregivers contribute a
total of approximately $600 billion to the U.S. health care
system. However, the fact that a caregiver provides services to
a loved one without expectation of compensation does not mean
that caregiving is entirely "free." Indeed, there is ample
evidence of its physical and mental toll on caregivers.
Caregiving is generally associated with higher levels of risk
for chronic health conditions like coronary heart disease,\3\
increased inflammation,\4\ and accelerated aging of the
caregiver's immune system.\5\ There is also evidence that
caregivers are generally more likely to neglect their own
health and forego preventative care for their own medical
needs.\6\
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\3\ Haley WE, Roth DL, Howard G, Safford MM. Caregiving strain and
estimated risk for stroke and coronary heart disease among spouse
caregivers: differential effects by race and sex. Stroke. 2010
Feb;41(2):331-6. doi: 10.1161/STROKEAHA.109.568279. Epub 2010 Jan 14.
PMID: 20075357; PMCID: PMC2818824.
\4\ Allen A. P., Curran E. A., Duggan A., Cryan J. F., Chorcorain
A. N., Dinan T. G., . Clarke G (2017). A systematic review of the
psychobiological burden of informal caregiving for patients with
dementia: Focus on cognitive and biological markers of chronic stress.
Neuroscience and Biobehavioral Reviews, 73, 123-164. doi:10.1016/
j.neubiorev.2016.12.006
\5\ Mausbach, B. T., Patterson, T. L., Von Kanel, R., Mills, P. J.,
Dimsdale, J. E., Ancoli-Israel, S., & Grant, I. (2007a). The
attenuating effect of personal mastery on the relations between stress
and Alzheimer caregiver health: A five-year longitudinal analysis.
Aging & Mental Health, 11, 637-644.
\6\ Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C.
& Jackson, S. (1997). Health effects of caregiving: The Caregiver
Health Effects Study: An ancillary study of The Cardiovascular Health
Study. Annals of Behavioral Medicine , 19, 110-116.
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The mental health impacts of caregiving tell a similar
story. While caregivers may experience some degree of personal
psychological fulfillment and meaning through their efforts,\7\
caregivers also are more likely to report higher levels of
anxiety and depression than their non-caregiver
counterparts.\8\ In addition to the obvious physical and mental
strain from providing direct support, caregivers experience
additional stressors that can contribute to this phenomenon.
With 61% of caregivers under employment, caregivers may
experience stress from balancing their work-related demands
with those at home.\9\ Caregivers may also be struggling with
balancing care for the older adult with caring for other family
members, as 30% of caregivers reside in multi-generational
households with children or grandchildren.\10\ Caregivers for
patients with dementia, for example, may be coping with their
own sense of anticipatory bereavement of losing their loved one
or a deterioration of the relationship due to any cognitive or
behavioral manifestations of the disease.\11\
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\7\ Miller, B. Adult Children's Perceptions of Caregiver Stress and
Satisfaction. Journal of Applied Gerontology 8, no. 3 (1989): 275-93
\8\ Beach, S. R., Schulz, R., Yee, J. L., & Jackson, S. (2000).
Negative and positive health effects of caring for a disabled spouse:
Longitudinal findings from the Caregiver Health Effects Study.
Psychology & Aging, 15 (2), 259-271.doi:10.1037//0882-7974.15.2.259.
\9\ AARP and National Alliance for Caregiving. Caregiving in the
United States 2020. Washington, DC: AARP. May 2020. https://doi.org/
10.26419/ppi.00103.001
\10\ Id.
\11\ Ascher EA, Sturm VE, Seider BH, Holley SR, Miller BL, Levenson
RW. Relationship satisfaction and emotional language in frontotemporal
dementia and Alzheimer disease patients and spousal caregivers.
Alzheimer Dis Assoc Disord. 2010 Jan-Mar;24(1):49-55. doi: 10.1097/
WAD.0b013e3181bd66a3. PMID: 20220322; PMCID: PMC2838197.
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Evidence-Based Caregiver Training
Caregivers are rarely, if ever, asked whether they are
prepared for their new caregiving role. Instead, they are
frequently thrust very quickly into caregiving situations with
little notice and limited training as to the complicated tasks
they are expected to perform as part of this role.
Unfortunately, this lack of mastery of caregiving tasks only
serves to amplify the anxiety and depression that caregivers
may already be experiencing.\12\
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\12\ Chan EY, Glass G, Chua KC, Ali N, Lim WS. Relationship between
Mastery and Caregiving Competence in Protecting against Burden, Anxiety
and Depression among Caregivers of Frail Older Adults. J Nutr Health
Aging. 2018;22(10):1238-1245. doi: 10.1007/s12603-018-1098-1. PMID:
30498832; PMCID: PMC6302747.
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Caregiver Behavior Management Training (CBMT) helps fulfill
this unmet need of caregivers. CBMT is provided to parents or
caregivers of multiple patients simultaneously, teaching
interventions that caregivers can independently use to better
manage the patient's disease. Behavioral training associated
with this service requires the clinical expertise of at least
one psychologist or qualified health care professional (QHP)
who is well versed in evidence-based behavior management
procedures and strategies.
This has the effect of multiplying the impact of treatment,
serving more individuals while utilizing fewer clinical hours.
In other words, more patients are helped by fewer providers
over less time when compared to individual or family therapy
treatment sessions. For example, providing a 60-minute group
caregiver behavior management service for five patients over
twelve sessions would result in 720 minutes of direct patient
care, compared to treating five patients with family therapy
for 12 sessions, which would result in 3,600 minutes of direct
patient care. This efficiency improves access to care for
patients and ultimately results in cost savings for the health
care system.\13\ These services are also known to delay the
necessity of nursing home placements for older adults with
dementia, allowing patients to remain in their own homes over a
longer span of time.\14\
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\13\ Sansoni, J., Anderson, K. H., Varona, L. M., Varela, G.
(2013). Caregivers of Alzheimer's patients and factors influencing
institutionalization of loved ones: some considerations on existing
literature. Annali di Igiene: Medicina Preventiva e di Comunita, 25(3),
235-46. doi: 10.7416/ai.2013.1926. PMID: 23598807
\14\ Mittelman, M. S., Haley, W. E., Clay, O. J., Roth, D. L.
(2006). Improving caregiver well-being delays nursing home placement of
patients with Alzheimer disease. Neurology, 67(9), 1592-9. doi:
10.1212/01. wnl.0000242727.81172.91. PMID: 17101889.
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APA Services applauds the Centers for Medicare and Medicaid
Services (CMS) for activating a new coding and reimbursement
mechanism for CBMT services provided by psychologists and other
QHPs (CPT Codes 96202/96203) in its annual Medicare Physician
Fee Schedule proposed rule. APA Services also applauds CMS for
allowing such services to be furnished via telehealth, enabling
access for the many caregivers who cannot travel to an in-
person clinical setting due to their own or the patient's
circumstances. APA Services calls on members of the Committee
to support this proposed rule and to facilitate similar
coverage of these services in Medicaid and Marketplace plans.
Prompt Access to Evidence-Based Treatment
Of course, adequate training will not entirely eliminate
the need for individual mental or behavioral health care for
some caregivers. Congress must make it a priority to facilitate
access to mental and behavioral health services for caregivers
and other individuals who may be struggling with an unmet
mental or behavioral health need. The acceptance and use of
telehealth (including telehealth furnished via audioonly
interactions) for treatment of mental and behavioral health
services, for example, remains a popular option for patients
and practitioners alike.\15\ In some cases, the decision of
patients and providers to use telehealth may have superior
clinical benefits over their in-person counterparts; for
example, psychologists treating patients via telehealth may
gain insights into the patient's personal living environment or
patients may feel more comfortable accessing treatment from the
comfort and safety of their own homes.
---------------------------------------------------------------------------
\15\ See, e.g., Bartelt K, Piff A, Allen S, Barkley E. Telehealth
Utilization Higher Than Pre-Pandemic Levels, but Down from Pandemic
Highs. Epic Research. https://epicresearch.org/articles/telehealth-
utilization-higher-than-prepandemic-levels-but-down-from-pandemic-
highs. Accessed on July 12, 2024.
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Congress is faced with critical decisions before the end of
this year on whether to continue this forward momentum on
access to tele-mental and tele-behavioral services.
Fortunately, Congress decided to permanently allow Medicare
beneficiaries to receive mental health services via telehealth
from their own homes in the Consolidated Appropriations Act of
2021; however, it also imposed a requirement that Medicare
beneficiaries must be seen in-person by the provider for
continued coverage of their telehealth services.
Congress should reconsider and repeal the "in-person visit"
requirement. Patients seeking mental health services already
face several obstacles to treatment, including but not limited
to social stigma, complicated insurance coverage policies, and
practical difficulties like transportation. Imposing an
arbitrary and uniform in-person visit requirement increases the
likelihood that patients will simply discontinue treatment
altogether. Rather than discouraging fraudulent claims, this
policy will instead discourage many more legitimate claims for
treatment. Additionally, the fact that the in-person visit only
applies to mental health services further perpetuates a bias
against coverage of mental and behavioral health treatment in
Medicare and other insurance coverage programs.
APA Services calls on members of the Committee to adopt a
permanent solution, such as the Telemental Health Care Access
Act (H.R. 3432), that would ensure Medicare beneficiaries'
continued access to the broad range of mental and behavioral
health services via telehealth without unnecessary and
arbitrary barriers to treatment. Given the political dynamics
of a Presidential election year, however, we understand that
Congress may need additional time to make this decision. APA
Services acknowledges that a twoyear extension of the current
Medicare coverage rules, such as that offered in the Energy &
Commerce Committee's forthcoming markup of the Telehealth
Modernization Act (H.R. 7623), may be necessary as a short-term
solution. However, we ask Congress to make a longer-term
decision by the end of that extension; patients require
stability in their ability to access mental and behavioral
health treatment remotely.
There are also innovative and evidence-based models of
integrating behavioral health treatment into primary care
practices, such as the Primary Care Behavioral Health (PCBH)
model and the Collaborative Care model (CoCM), as well as
models that blend different features of PCBH and CoCM based on
the resources available in their local community. There is
ample evidence that integrated care can result in cost savings
across the health system, since behavioral comorbidities can
lead to medical costs for physical conditions that are two to
three times higher than incurred for patients without
behavioral health conditions.\16\ These benefits are especially
felt in rural and underserved areas where the local primary
care clinic is the default health care system. However, despite
its potential, a number of barriers exist to practitioner
adoption of integrated care.\17\ These include additional
clinical and administrative staffing costs, adequate
reimbursement for increased interprofessional consultation,
education, and training, changes to primary care practices'
operating procedures, upgrades or modifications to physical
office spaces, and investments in information technology
systems.
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\16\ See, e.g., Ross, K. M., Klein, B., Ferro, K., McQueeney, D.
A., Gernon, R., & Miller, B. F. (2019). The cost effectiveness of
embedding a behavioral health clinician into an existing primary care
practice to facilitate the integration of care: A prospective, case-
control program evaluation. Journal of Clinical Psychology in Medical
Settings, 26, 59-67 (finding that integrating a psychologist into a
primary care practice resulted in cost savings of $860 per member per
year).
\17\ Hartnett, T., Loud, G., Harris, J., Curtis, M., Hoagland,
G.W., Serafini, M., Glassberg, H., Chung, H. (2023). Strengthening the
Integrated Care Workforce. Bipartisan Policy Center. https://
bipartisanpolicy.org/report/strengthening-the-integrated-care-
workforce/
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To help practitioners overcome these barriers, APA Services
urges members of this Committee to support the COMPLETE Care
Act (H.R. 5819/S. 1378). This bill would temporarily boost
Medicare reimbursement rates for certain integrated care codes
to aid in the up-front adoption costs, require CMS to provide
technical assistance to primary care practices seeking to adopt
evidence-based behavioral health integration models, and
require CMS to establish quality measurement reporting
requirements for behavioral health integration services within
existing Medicare alternative payment models. Last December,
the Senate Finance Committee voted 26-0 to approve key
provisions of the COMPLETE Care Act as part of the Better
Mental Health Care, Lower-Cost Drugs, and Extenders Act of
2023.
Robust Support for Key Caregiving Programs
Many federal programs provide a key supplement to services
provided by clinicians. Area Agencies on Aging (AAAs) and Aging
and Disability Resource Centers (ADRCs) serve as a critical hub
for services to older adults and adults with disabilities. For
example, the National Family Caregiver Support Program provides
grant funding to an array of supports to caregivers-including
those that are non-clinical in nature. Services commonly
provided under this program include information about services
available to caregivers in the community, navigation to
accessing these services, individual caregiver counseling
(including support groups and caregiver training), and
temporary respite care. However, important programs like this
are set to expire at the end of the current fiscal year due to
the expiration of the Older Americans Act. APA Services calls
on members of this Committee to support a robust
reauthorization of this critical piece of authorizing
legislation.
Further research is also a necessary means of developing
new innovations in caregiver support. The National Institute on
Aging (NIA) was founded in 1974 within the National Institutes
of Health (NIH) to support research on the health of older
adults. NIA-supported research provides the foundation for
scientific advancements in the field of gerontology, including
family caregivers' contributions. Funding for key research at
NIA would include research on caregivers' needs and how best to
address issues specific to caregivers. APA Services asks
members of this Committee to continue its support for robust
funding of NIH at $51.303 billion for FY 2025 and commensurate
increases in NIA funding.
APA Services appreciates the Committee's efforts to ensure
that the invaluable efforts of caregivers are not lost due to
physical or mental health challenges. We are eager to work with
this Committee and its members to develop legislation that
would accomplish this goal.
U.S. Senate Special Committee on Aging
"From Infancy to Aging: The Effects of Caregiving Across the Lifespan"
August 7, 2024
Statement for the Record
Testimony of MomsRising
I am Karen Showalter, Pennsylvania Moms Force Director for
MomsRising, the online and on-the-ground organization of more
than one million mothers and their families, including over
25,000here in Pennsylvania, working to improve family economic
security, stop discrimination against women and moms, and build
a nation where businesses and families can thrive.
Pennsylvanians applaud Senator Bob Casey for holding
today's field hearing in Pittsburgh, "Family Caregiving Across
the Lifespan." This hearing underscores the Senator's
longstanding commitment to hearing directly from working
families about the most pressing challenges they face because
our country has failed to invest in common-sense care
infrastructure policies. Addressing these challenges is
essential to our State's and our country's success, and we are
grateful for Senator Casey's work to shine a light on the
urgent need to invest in care.
At MomsRising, we know that care work, whether it's paid or
unpaid, powers our economy. Care work is the work that makes
all other work possible, but unfortunately, in our country
today, too often care work is undervalued, underpaid and
unsupported. That has to change if we are to build a thriving
economy that works for working families.
Building a care infrastructure is a top priority for
MomsRising because it is a top priority for our members, who
tell us every day that their families are struggling without
paid leave, access to high-quality, affordable child care,
elder and disability care, and more.
The challenges are immense. Right now in Pennsylvania and
across the country, most working people have no access to any
paid leave through their employers. That means zero paid leave
to welcome a new baby, zero paid leave to care for a loved one
who needs surgery, and zero paid leave to seek care after a
cancer diagnosis. In those moments, the last thing anyone
should have to worry about is how they will keep their job or
pay their bills, but without paid leave, those worries are
life-shaping for hardworking people with new babies or health
emergencies.
For example: Nancy is a MomsRising member in the
Philadelphia area who works in retail, sometimes working 50
hours/week. She also cares for her aging father, taking him to
doctor's appointments, keeping his home in order, and ensuring
his basic needs are met. Without paid leave, she is forced to
squeeze her caregiving responsibilities into non-working hours.
If her dad has an emergency, she loses pay, making it harder to
pay the bills. Nancy told us, "Paid leave would mean so much
for his care, our relationship, and my body/mindset. I feel
exhausted and stressed every single day."
If Congress were to pass the FAMILY Act, guaranteeing 12
weeks of comprehensive paid leave for all workers, it would
make an enormous difference for Nancy and millions of
caregivers like her.
At MomsRising, we also hear from members about the stresses
and challenges they're facing because of our country's child
care crisis. Parents are trying their best, but struggling with
high costs and low availability. On the other hand, child care
workers, the majority of which are women and mothers, are
struggling to support their own families with low wages and
scant or no benefits.
All kids deserve high-quality early learning opportunities,
and when parents can't find or afford the child care they need
to hold jobs and provide for their families, it doesn't just
hurt families - it causes immense harm to businesses and our
economy.
We lose out on the skills of parents like Stefanie, a
MomsRising member in Palmyra. Stefanie earned a master's degree
and used to work in a hospital lab, but when COVID hit, she had
to leave her job because child care wasn't available. Recently,
she was contacted about a job opportunity, but when she looked
into child care, she found that care for her three young
children would cost her family more than $4,000 a month, and
that it would take months if not years to get off the waitlist,
making the ability to even find child care in time unlikely.
Families face similar challenges finding affordable elder
and disability care, because of decades of underinvestment,
MomsRising members tell us finding home- and community-based
support for aging parents or loved ones with disabilities is
like trying to find a needle in a haystack. By and large, care
workers of all kinds aren't paid what they deserve. That's led
to workforce shortages, making it even harder for families to
find the support they need.
For sandwich generation caregivers, these issues intersect
and compound - and the number of sandwich generation caregivers
is growing. As of 2018, more than eight million people
nationwide were providing unpaid care for an adult, such as an
aging parent, while also caring for a child under 18. By 2060,
the number of adults over age 65 is expected to double compared
to what it was in 2016.Whether or not we choose to invest in
care now will determine whether we can meet that challenge.
Just like we need to build bridges and roads to drive on to get
to work - we need care infrastructure so parents can go to
work, so kids can thrive, and so care workers can earn living
wages - and we need a path to citizenship for immigrant care
workers.
That's why MomsRising is building a broad coalition of
parents, caregivers, care workers, and business leaders to
fight for the care agenda. The good news: These policies are
enormously popular. In a recent poll MomsRising commissioned
with the National Women's Law Center, voters across the
spectrum voiced strong support for raising taxes on the
wealthiest individuals and corporations to fund federal
investments in care.
We are enormously grateful for leaders like Senator Casey
who are working to make those investments a reality, and for
all of the panelists who shared their perspectives at today's
field hearing. Together, we can build the care infrastructure
that will make it possible for our country's children,
families, communities, businesses and economy to thrive.
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