[Senate Hearing 117-223]
[From the U.S. Government Publishing Office]


                                                    S. Hrg. 117-223

                         AN ECONOMY THAT CARES:
                           THE IMPORTANCE OF
                          HOME-BASED SERVICES

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                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED SEVENTEENTH CONGRESS


                             SECOND SESSION

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                             WASHINGTON, DC

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                             MARCH 23, 2022

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                           Serial No. 117-14

         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
        
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                    U.S. GOVERNMENT PUBLISHING OFFICE                    
47-178 PDF                 WASHINGTON : 2022                     
          
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                       SPECIAL COMMITTEE ON AGING

              ROBERT P. CASEY, JR., Pennsylvania, Chairman

KIRSTEN E. GILLIBRAND, New York      TIM SCOTT, South Carolina
RICHARD BLUMENTHAL, Connecticut      SUSAN M. COLLINS, Maine
ELIZABETH WARREN, Massachusetts      RICHARD BURR, North Carolina
JACKY ROSEN, Nevada                  MARCO RUBIO, Florida
MARK KELLY, Arizona                  MIKE BRAUN, Indiana
RAPHAEL WARNOCK, Georgia             RICK SCOTT, Florida
                                     MIKE LEE, Utah
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                 Stacy Sanders, Majority Staff Director
                 Neri Martinez, 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
Opening Statement of Senator Tim Scott, Ranking Member...........     2

                           PANEL OF WITNESSES

Lisa Harootunian, Associate Director, Health Program, Bipartisan 
  Policy Center, Washington, D.C.................................     5
Anne Tumlinson, CEO, ATI Advisory and Founder, Daughterhood, 
  Washington, D.C................................................     6
Brandon Kingsmore, Disability Advocate, Public Speaker, 
  (Accompanied by Lynn Weidner, Home Care Worker) Allentown, 
  Pennsylvania...................................................     8
Alene Shaheed, Home Care Recipient and Former Florida Health 
  Justice Project Client, Jacksonville, Florida..................     9

                                APPENDIX
                      Prepared Witness Statements

Lisa Harootunian, Associate Director, Health Program, Bipartisan 
  Policy Center, Washington, D.C.................................    29
Anne Tumlinson, CEO, ATI Advisory and Founder, Daughterhood, 
  Washington, D.C................................................    34
Brandon Kingsmore, Disability Advocate, Public Speaker, 
  (Accompanied by Lynn Weidner, Home Care Worker) Allentown, 
  Pennsylvania...................................................    38
Alene Shaheed, Home Care Recipient and Former Florida Health 
  Justice Project Client, Jacksonville, Florida..................    44

                        Questions for the Record

Lisa Harootunian, Associate Director, Health Program, Bipartisan 
  Policy Center, Washington, D.C.................................    49
Anne Tumlinson, CEO, ATI Advisory and Founder, Daughterhood, 
  Washington, D.C................................................    53
Brandon Kingsmore, Disability Advocate, Public Speaker, 
  (Accompanied by Lynn Weidner, Home Care Worker) Allentown, 
  Pennsylvania...................................................    56
Alene Shaheed, Home Care Recipient and Former Florida Health 
  Justice Project Client, Jacksonville, Florida..................    59

                       Statements for the Record

Closing Statement, Senator Tim Scott.............................    63
The Bipartisan Policy............................................    64
Constituent Statements for the Record............................   108

 
                         AN ECONOMY THAT CARES:
                           THE IMPORTANCE OF
                          HOME-BASED SERVICES

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                       WEDNESDAY, MARCH 23, 2022

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 10:30 a.m., via 
Webex, Hon. Robert P. Casey, Chairman of the Committee, 
presiding.
    Present: Senators Casey, Gillibrand, Blumenthal, Warren, 
Rosen, Warnock, Tim Scott, Braun, and Rick Scott.

                 OPENING STATEMENT OF SENATOR 
                 ROBERT P. CASEY, JR., CHAIRMAN

    The Chairman. We will get started.
    The hearing will come to order. We are gathered today in 
the Aging Committee to discuss the critical need to lower costs 
for families, to get Americans back to work, and to strengthen 
our economy. For too long, our Nation has viewed caregiving as 
a personal problem or limited to one family, and expecting 
those families to figure it out on their own. American families 
are silently struggling to find and afford reliable, high-
quality care that enables their loved ones to live 
independently.
    Today our witnesses will speak about the importance of home 
and community-based services for seniors and people with 
disabilities and the investment American families across our 
Nation desperately need. Brandon Kingsmore and Alene Shaheed 
will testify about how these services have changed their lives. 
They will talk about how home-based services make it possible 
not only for them to live but to thrive.
    Brandon and Alene are not alone. More than 3 million 
Americans are able to remain in their homes and stay active in 
their communities because of home-based care, but at the same 
time, almost 820,000 Americans are languishing on wait lists 
for these services, sometimes waiting not just weeks, not just 
months, but years waiting for these services. This limited 
access to care hurts more than just those in need of services. 
An underinvestment in caregiving affects all of us, it even 
hurts our economy. Without access to this care, many people, 
usually women, are forced to leave the workforce to care for a 
loved one.
    An investment in home-based care is an investment in 
families and our Nation. It will help people get back to work. 
It gives families, something that I believe that is 
immeasurable, peace of mind, the peace of mind in knowing that 
their loved ones are cared for.
    This kind of investment will also give home care workers, 
the majority of whom are women from communities of color, a 
much-needed and long overdue raise. These workers provide 
essential care. An investment in home and community-based 
services would give these hard-working women, or I should say 
mostly women, the opportunity to better support their own 
families and their communities.
    Last June, 40 Senators introduced the Better Care Better 
Jobs Act, Senate bill S. 2210. I am proud to lead that 
legislation in the Senate, which has earned the support of over 
800 national and state organizations. This bill is an 
investment in better jobs for home care workers, better care 
for seniors and people with disabilities, and better support 
for those family caregivers I talked about earlier. This 
investment is about services and jobs.
    Over 100 top economists and public policy experts have said 
that investing in home care will help the United States 
maintain a competitive workforce. The leading economic analysis 
firm, Moody's, found that, ``long term, the economy receives a 
lift from this policy, as it supports higher labor force 
growth.''
    This investment is what makes sense for families, what 
makes sense for workers and what makes sense for our Nation, so 
it is an investment that is needed now, not 10, 20 years from 
now. We need this investment now.
    The Committee has received over 335 statements for the 
record that support the need for an immediate investment in 
home and community-based services, so I look forward to hearing 
from our witnesses about this important issue.
    Ranking Member Scott, I will turn to you for your opening 
remarks.

                 OPENING STATEMENT OF SENATOR 
                   TIM SCOTT, RANKING MEMBER

    Senator Tim Scott. Thank you, Chairman Casey, and thank you 
to the witnesses for being with us today. This is such an 
important topic and I am so thankful that Chairman Casey has 
decided to make this one of our priorities for this day.
    Without any question, you think about the fact that we have 
46 million Americans today over the age of 65 living in the 
U.S., and just a few years from now, by the year 2050, that 
number will go from 46 million to around 90 million Americans. 
That is astounding growth that we should anticipate.
    By 2030, 1 in 5 Americans is projected to be 65 years or 
older. Nearly 90 percent of our seniors want to stay in their 
own homes as they age. To do this, seniors often turn to the 
support of their family members, and when I say that I am going 
to talk about how 44 million Americans provide, every year, 
around 37 billion hours--B as in boy--billion hours of 
assistance to family members. That, to me, is astounding, and 
it is a number for us to digest, but it is really hard to 
understand how important staying in your own home is and the 
cost, maybe not just financial cost but the human cost of 
providing that care, 37 billion hours a year.
    Family caregivers provide over 75 percent of caregiving 
here in the United States. That is a significant investment 
into our loved ones, and it is an important investment and one 
that we should take a look at and find ways to make that 
support better.
    The Build Back Better proposal relies almost exclusively on 
funding long-term care through Medicaid, and that path, of 
course, is going to be quite challenging for so many families. 
The qualifications for Medicaid is significantly a hard 
threshold to cross over, which requires you to eliminate most 
of your resources, so that means that we need to look for other 
solutions. A better path forward would invest significant 
funding in a push for a self-directed care approach. This would 
give caregivers and recipients the means to make informed 
decisions about the services they need while providing 
resources to do so.
    Last June, I released a report, ``Expanding Opportunities 
for Older Americans: Self-Directed Home and Community Based 
Services.'' We looked for solutions in the report so that we 
could understand and appreciate what actually would help, what 
would be beneficial for families providing those 37 billion 
hours on an annual basis, and some of the solutions that we 
talked about was encouraging State Medicaid programs to 
establish self-directed care options.
    In addition to that, growing the long-term care insurance 
market, this is a critical piece. The earlier you purchase this 
insurance coverage the cheaper it is and the longer it will 
last for most American families, empowering the Nation's 
volunteer army of 53 million family caregivers through 
sustainable funding that will improve conditions for caregivers 
while enhancing service quality.
    I have been around amazing caregivers all of my life, 
frankly. My mother is a nurse's assistant. She is in her 49th 
year of full-time employment, providing care. She loves what 
she does so much so that it is, in fact, her mission, and so 
understanding and appreciating first-hand the struggles, the 
challenges, and the rewards of caregiving are undeniable in the 
household that I grew up in, and frankly, as I see my mother on 
the weekends when I am back in town she talks about how 
important it is for us to address this issue. It is one of the 
reasons why, Chairman Casey, I am so thankful that we are 
having the hearing that we are today.
    The Chairman. Ranking Member Scott, thanks very much for 
your opening statement. Now we will introduce our witnesses. 
The order we had it in, Ranking Member Scott, is you would do 
the first introduction. Is that correct?
    Senator Tim Scott. Yes, sir.
    The Chairman. Okay.
    Senator Tim Scott. Thank you, Mr. Chairman.
    Last month we held a hearing on how to improve care 
experience for people enrolled both in Medicare and Medicaid. 
We call this the dual eligibles, and this is such an important 
part of the folks that we are talking about today, are those 
folks who are dual eligible for both Medicaid and Medicare.
    We heard from a witness representing South Carolina's 
Department of Health and Human Services. She described 
consolidating 10 Medicaid home and community-based services 
over 5 years. Too many waivers create confusion and 
administrative burden for both patients and providers. Our 
witness today has witnessed an important report describing how 
Congress can help states avoid this unnecessary complexity.
    Lisa--I am going to butcher your last name--Lisa 
Harootunian is an Associate Director for the Bipartisan Policy 
Center Health Program. She is an expert on Medicaid policy 
issues, including long-term care and home and community-based 
services. Lisa is responsible for managing BPC's portfolio of 
work on long-term care, chronic care, integrating care for 
dual-eligible beneficiaries and other issues impacting 
individuals with complex needs.
    Lisa has been with BPC for almost 3 years. She previously 
worked for Virginia State's Medicare agency where she 
researched and analyzed issues impacting the Medicaid program.
    Lisa holds a juris doctor, a masters of social work degree, 
and is a member of the Virginia State Bar. In her testimony, we 
will hear Lisa explain the Bipartisan Policy Center's proposal 
to make it easier for states to streamline and simplify these 
home and community-based service authorities.
    We look forward to hearing your testimony, and I apologize 
for mispronouncing your last name.
    The Chairman. Ranking Member Scott, thank you. My notes say 
you got it right. I hope I am right about that, but thank you, 
Ranking Member Scott.
    Our second witness is Anne Tumlinson. Anne is a national 
expert on health and aging, assisting states and providers on 
policies involving health and eldercare systems. She is the 
Founder and CEO of ATI Advisory, a leading national research 
firm.
    I will move next to our third witness, Brandon Kingsmore, 
from Allentown, Pennsylvania. Brandon is currently a recipient 
of home and community-based services. His care worker, Lynn 
Weidner, has also joined us today.
    Brandon receives home care assistance from Lynn, which 
enables him to live independently. After trying other careers, 
Lynn found her true passion in health care working as a full-
time caregiver.
    Both Lynn and Brandon have been strong advocates for the 
importance of these services, and they have worked along with 
me and our office and others to make the case about funding 
these services, and recently, I guess back in October now, both 
Lynn and Brandon were in Scranton, Pennsylvania, my hometown, 
during a visit of the President of the United States, and 
Brandon and Lynn were able to spend some time talking to 
President Biden about how Lynn's care helps Brandon every day, 
and that was a revealing moment for so many of us who were 
there on that day.
    We want to thank both Brandon Kingsmore and Weidner for 
joining us today.
    Then finally, our fourth witness--because I am including 
Lynn and Brandon as one witness; I think Brandon might do most 
of the talking here, but we will hear from both--but our fourth 
witness is Alene Shaheed. Alene is from Jacksonville, Florida. 
After working 30 years in retail she retired but returned to 
work in her 60's as a security guard. As a result of a spinal 
cord injury, Ms. Shaheed lost the ability to walk. She now 
receives 20 hours of home care, allowing her to live safely and 
independently in her own apartment, cut back from the 35 hours 
a week before the pandemic.
    Ms. Shaheed, we are also grateful for your testimony today 
and grateful you are with us at this hearing.
    Now we will turn to our witnesses. We will begin with Lisa 
Harootunian, and you may begin your testimony, and please 
correct us if we mispronounced your last name.

                 STATEMENT OF LISA HAROOTUNIAN,

              ASSOCIATE DIRECTOR, HEALTH PROGRAM,

           BIPARTISAN POLICY CENTER, WASHINGTON, D.C.

    Ms. Harootunian. Thank you. Good morning, Chairman Casey, 
Ranking Member Scott, and distinguished members of the 
Committee. Thank you for inviting me to testify today about a 
bipartisan pathway to improve the availability of Medicaid home 
and community-based services. I commend the Committee for 
considering this critical issue through a bipartisan lens.
    My name is Lisa Harootunian and I am Associate Director of 
the Health Program at the Bipartisan Policy Center, a nonprofit 
organization that combines the best ideas from both parties to 
promote health, security, and opportunity for all Americans. 
Today I will cover the importance of improving access to 
Medicare home and community-based services, key challenges 
created by the current patchwork of HCBS authorities that 
states use, and BPC recommendation to address those challenges.
    Expanding access to home and community-based services has 
historically received bipartisan support, and Congress has made 
meaningful progress toward improving the availability of those 
services since the program began. However, the need for these 
services persists, and it will continue to grow as the 
population ages rapidly.
    In addition, the high rates of COVID-19 infection and 
mortality in congregate care settings have exacerbated the need 
for home and community-based care options, and for individuals 
with functional limitations or cognitive impairment, HCBS has 
long played a critical role in allowing Medicaid beneficiaries 
to live independently and to work. Together, these factors have 
brought national attention to the need for better access to 
home and community-based services.
    Before I discuss BPC's recommendation to improve access to 
HCBS, I would like to first highlight some of the challenges in 
the current system that we sought to address.
    Historically, states have predominantly relied on 1915(c) 
waivers to provide HCBS because they allow states to target 
services to certain subpopulations and to certain regions. 
States may also cap enrollment, and together this all allows 
some budget predictability for services.
    States also use multiple 1915(c) waivers, with each State 
using an average of 5 waivers and some states relying on up to 
11 waivers at once. In addition, states also provide HCBS 
through 1115 waivers in State plan options, including 1915(I), 
(j), and (k) State plan amendments.
    This patchwork of HCBS waivers and State plan amendments 
that states use have led to three key barriers to the 
availability of these services, including, first, a system that 
is extremely complex and burdensome for states to administer; 
second, HCBS programs that are challenging for beneficiaries to 
navigate; and third, inequities in access to HCBS, both within 
and between states.
    What can we do? To address the growing number of Americans 
who need assistance with daily activities but who prefer to 
receive care in their home or community, continued bipartisan 
collaboration is necessary. As described in BPC's report, 
``Streamlining and Simplifying Medicaid HCBS Authorities,'' 
Congress should consider a bipartisan pathway forward that 
would improve the administratively complex and piecemeal 
structure for HCBS authorities.
    To this end, BPC recommends streamlining and simplifying 
Medicaid HCBS waiver and State plan authorities into a single 
State plan amendment that retains much of the flexibilities of 
existing authorities. This would reduce complexity in the 
system while still providing states with budget predictability 
for HCBS. Ultimately, this change should improve access to 
services for Medicaid beneficiaries by reducing administrative 
burden for states managing HCBS programs, making it easier for 
beneficiaries to navigate the system, and helping to make 
services more uniform from State to State and across 
subpopulations in a State.
    While BPC's recommendation to simplify and streamline 
Medicaid HCBS waivers and State plan amendments would address 
several important challenges to HCBS access, we recognize that 
it would not solve all of the challenges to service access and 
delivery, but streamlining and simplifying these authorities 
could be addressed independently or as part of other efforts to 
reform the HCBS system.
    The enormously complex system remains a challenge to the 
availability of home and community-based services but with your 
continued leadership and bipartisan collaboration we can help 
more Americans access the critical services that they need to 
live independently and to work.
    Thank you once again to the Committee for convening this 
important hearing, and I look forward to your questions.
    The Chairman. Thanks very much, Ms. Harootunian. We are 
grateful for your testimony.
    I usually mention at the beginning of the hearing about 
Senators being in and out of this hearing and other hearings 
and commitments they have. I know so far Senator Warren has 
appeared at the hearing as well as Senator Rick Scott, and I 
know others will be moving in and out as we move forward.
    Our second witness is Ms. Tumlinson. You may begin.

               STATEMENT OF ANNE TUMLINSON, CEO,

            ATI ADVISORY AND FOUNDER, DAUGHTERHOOD,

                        WASHINGTON, D.C.

    Ms. Tumlinson. Chairman Casey, Ranking Member Scott, 
members of the Committee, thank you for the opportunity to 
testify on the importance of home-based services to family 
caregivers. In addition to being the CEO of the research 
advisory firm, ATI Advisory, I am also the founder of a 
grassroots community of family caregivers called Daughterhood.
    Home and community-based services make it possible for many 
individuals with long-term service and support needs to remain 
where they want to be, which is in their homes, but 
unfortunately our home care system and its infrastructure are 
vastly underdeveloped and under-resourced to meet the growing 
need for service, and if we do not invest in them American 
families are going to face very serious economic challenges, 
possibly even more than they are today.
    What few people is that most older adults with high levels 
of need still live in the community, and many of those who do 
rely almost exclusively on family caregivers. Fully a third of 
high-need Medicare beneficiaries who are living in the 
community today with that high level of need are below 200 
percent of the Federal poverty level and they are not on 
Medicaid, which means they cannot access home-based care.
    As a reminder, unlike nursing home, Federal Medicaid law 
does not require states to offer home and community-based 
benefits, and for older adults and people with physical 
disabilities, Medicaid still spends more on institutional care 
than on home and community-based services, and even among 
individuals with resources, finding and deploying even 
privately financed home-based services and supports is very 
challenging. These families report not knowing where to go and 
not being able to find what they need.
    The good news is that states received a temporary infusion 
of Federal funds for home and community-based services in the 
American Rescue Plan Act, but to stop here would be like 
bringing an umbrella to a hurricane. The number of individuals 
in our country who are 85 years and older will double by the 
year 2035, and that population is the 85 years and older who 
are much more likely to have high needs, and at the same time, 
caregivers available to take care of them are declining.
    Much more Federal investment is needed to galvanize and 
support states and communities in developing the infrastructure 
and systems along with a variety of publicly and privately 
funded HCBS, home and community-based services, can travel. If 
we fail to make a sustained Federal investment in home and 
community-based services we will continue to rely heavily on 
unpaid family caregivers, and when they give out, nursing 
homes.
    What I can tell you from my own experience, as well as 
being party of community of unpaid family caregivers, this is 
simply not a sustainable path. Caring for a person who needs 
assistance performing daily activities is hard, full-time work. 
Family caregivers tell me all the time about how they quit 
their jobs or cut back, they spend less time with their 
children, they get sick, they spend their own resources, and 
often their only choice, aside from quitting, is a nursing 
home, because they cannot find adequate support in the 
community.
    As the growth in the size of this very old population 
starts to accelerate, our families, employers, communities, 
states will feel these strains in a really profoundly, 
pronounced way. Investing in home and community-based services 
is one of the most impactful actions that we can take today to 
support individuals in need and their families in the future.
    Thank you again, and I look forward to your questions.
    The Chairman. Ms. Tumlinson, thanks for your testimony. We 
will now turn next to Brandon Kingsmore and Lynn Weidner.

         BRANDON KINGSMORE, DISABILITY ADVOCATE, PUBLIC

             SPEAKER, (ACCOMPANIED BY LYNN WEIDNER,

           HOME CARE WORKER) ALLENTOWN, PENNSYLVANIA

    Mr. Kingsmore. Thank you for inviting me and my caregiver, 
Lynn, here to speak to today. My name is Brandon Kingsmore. I 
live in Allentown, Pennsylvania.
    I have relied on home care my whole life. People do not 
know what that is like so I will share my story, but how many 
times will I have to tell the same story over and over before I 
am taken seriously?
    I was born with cerebral palsy. Growing up we did not 
qualify for Medicaid but we also could not afford to pay for 
home care out of pocket. Money was already too tight. My mom 
had to be a full-time caregiver on top of her full-time job. My 
sister shared the responsibility of taking care of me, and she 
also gave up a lot of her teenage years to do that. It was hard 
to think about what we would do if anything happened to my mom.
    On days when no one could be home with me I spent 8 hours a 
day. I felt alone, glued to my home. It was all I could do to 
just sit in one place, play video games, or watch movies. If 
something happened to me I had no choice but to wait for 
someone to get home to help. For example, if I had to go to the 
bathroom there would not be anyone there to help me. It was 
dehumanizing.
    Qualifying for Medicaid made a big difference. Home care 
opened my world and allowed me to do more. Home care is 
everything to me. My ability to live depends on it. Without 
care, people like me wonder, will I get out of bed today? Will 
I eat today? Will I be able to go to the bathroom today? Being 
in a wheelchair is hard enough. The world is not built for 
people like me. Why do I have to fight for what should already 
be a basic human right?
    My life changed when Lynn became my caregiver. Lynn gives 
me the freedom to live my life the way I want, where I want, 
but not everyone is as fortunate as me. Many of the people 
cannot afford or access care now, or they are on a waiting 
list. We become isolated, depressed, and removed from society 
against our will.
    All we want is to be participate in our economy and 
communities, but the choice is often made for us. The way 
things are going now, we are seen as numbers, but we are not.
    I am nobody special. I am just a normal guy looking for a 
fair shot and a better life, but that shot hangs in the balance 
as you debate dollars and cents. This is not dollars and cents. 
This is life and death.
    Please do not make me tell the same story again. Home care 
workers give so much of themselves to give people like me a 
good life. I want caregivers like Lynn to have a good life as 
well. We have the opportunity to make history in this 
legislation. This could be a time for everyone to remember. 
This contains everybody--people like me as well.
    Please, invest and pass Better Care Better Jobs Act now. 
Thank you.
    Ms. Weidner. Good morning. Thank you for inviting me and 
Brandon to speak today. My name is Lynn Weidner. I have been 
Brandon's full-time caregiver for 11 years. Recently my mother 
fell ill so I am her caregiver as well.
    I have worked in long-term care for more than 20 years, as 
a CNA in nursing homes and groups homes and in home care, so I 
can say, with a great deal of expertise, our country's long-
term care system is crumbling, especially after COVID-19. It is 
like the game of Jenga, where you make one wrong move and the 
whole thing starts falling apart.
    Without the support of Congress there is no money to expand 
and improve care services or to pay, train, and sustain the 
home care workforce, and if you do not have a home care 
workforce then there is no care, and without care there is no 
life. The demand for care is skyrocketing but there is low pay 
and lack of benefits. They force home care workers to leave the 
industry.
    Policies like the Better Care Better Jobs Act will make 
sure that every care consumer has their needs met by a strong 
care workforce. I am fortunate to have something that many care 
workers do not, which is the right to join together in a union, 
and across the country, caregivers in our unions are demanding 
the changes that we need to provide the care that our consumers 
deserve. For all the victories that we have won over the years 
there is a long list of injustices that we need to keep 
fighting for.
    Brandon was actually born before the Americans With 
Disabilities Act was passed, and that was a great start. We 
still live in an ableist, ageist, racist, sexist world where 
people in need are being excluded and forgotten, and our 
country's leaders need to take a good look in the mirror and 
reevaluate how seniors and people with disabilities are 
treated, how home care workers are treated, how women of color, 
who do the majority of this work, are treated.
    March is Women's History Month. What better time to turn 
collective appreciation for women into meaningful action that 
lifts us out of poverty and finally gives us the respect, 
protection, and pay that we deserve?
    Without the support of the entire Senate we will be back to 
square one. Caregivers will suffer because they cannot afford 
food, shelter, health care, and there will be no one left to 
help keep people like Brandon alive. You know, we need better 
care. We need better jobs. We really need it now. Thank you.
    The Chairman. Lynn, thank you. I want to thank you and 
Brandon for your testimony. Finally, our final witness for 
today is Ms. Shaheed. You may begin your statement.

             STATEMENT OF ALENE SHAHEED, HOME CARE

          RECIPIENT AND FORMER FLORIDA HEALTH JUSTICE

             PROJECT CLIENT, JACKSONVILLE, FLORIDA

    Ms. Shaheed. Thank you, Chairman Casey, Ranking Member 
Scott, and the Members of the Committee. Thank you for the 
opportunity to share my experience with you today as someone 
who is enrolled in Medicaid home and community-based services. 
My name is Alene Shaheed. I am 76 years old and I live in 
Jacksonville, Florida. I live alone and have no relatives that 
live in this area.
    In 2005, I retired after 30 years. I started enjoying my 
retirement traveling, visiting friends, and doing some of the 
things I was not able to do while I was working. I was also 
taking care of my nephew, who was with me until 2010, when he 
graduated high school.
    In 2013, needing more money, I went back to work and worked 
as a security guard in a private community. In 2016, I started 
to experience mobility issues. I went to the doctor and learned 
that I had a growth on my spine. It took two surgeries to 
remove the growth, one in February 2017 and the second surgery 
in July of the same year. After the second surgery, I was 
unable to walk and now need a wheelchair for mobility. I also 
require assistance bathing, dressing, housekeeping, some 
toileting, and meal preparation.
    I am enrolled in Florida's Medicaid long-term waiver and I 
am approved for 35 hours of care per week. The assistance of 
the home health aide allows me to remain living at home, 
independent, and on my own, with assistance. When given the 
option, I chose to receive services at home and not go into a 
restrictive nursing home where you are told what to eat, when 
to eat, when to sleep, when to get up, and if you can have 
visitors. I chose to live at home and not going to a nursing 
home because I value my independence.
    I am approved for help for 7 days a week for 5 hours each 
day. Right now I can only find an aide for 20 of those hours. 
Since January 2022, I have not been able to find an aide to 
come on Saturdays, Sundays, and Mondays, so I do not have any 
help for 3 days until the aide comes.
    This means I am unable to shower for 3 days. I cannot take 
out the trash because I cannot get my wheelchair in and out of 
the trash room. I am only able make easy-to-prepare food on my 
own. A couple weeks ago when I was fixing myself ramen noodles, 
tipped over the cup, and accidentally poured boiling water onto 
my leg and sustained a second-degree burn. Thankfully it did 
not get infected, but the burn is on my leg which I use to 
transfer and making it difficult to do it by myself.
    Not having the help affects every aspect of my life because 
the aides are my lifeline to remaining independent. I 
absolutely do not want to go into a nursing home.
    Why is this happening to me and thousands of others? It is 
due to the underfunding of Medicaid and the wages of home care 
workers are too low. The average pay for aides is $10 to $13 an 
hour. Since the pandemic, the aides are unwilling to come and 
risk their health and their families' health for just $10 an 
hour, so they went into private-pay insurers who pay more and 
to jobs that pay more. The workers are hurt by how little they 
are paid and I am hurt by how little they are paid. Valuing me 
means valuing them, and valuing them means valuing me, and we 
all deserve to be valued.
    I know that many people are in the same situation as I am 
that need these services but they must be adequately funded. 
Thank you for allowing me to share my story with you today.
    The Chairman. Ms. Shaheed, thank you very much for your 
testimony, and thanks for sharing your own personal story. We 
are grateful for that.
    We will turn to our questions now, and folks know how we 
alternate between both sides of the aisle. I will start and 
then we will go next to Senator Braun, and then Senator 
Gillibrand, and we will go from there as Senator appear.
    Let me just start. On this round I will just ask one 
question. I want to start with Brandon Kingsmore. Brandon, I 
want to ask you about your story, a lot of which you shared 
with us today. You shared how home-based services has enabled 
you to live a life that is a substantial life. In fact, I heard 
you say that in Scranton back in October when you were talking 
to the President. I understand that without that care that Lynn 
provides you that this kind of a life would not be possible for 
you.
    Many people across the Nation are not able to receive the 
same kind of care that you are receiving. In your written 
testimony, you note that you did not qualify for Medicaid until 
you were 18 years of age because of how limited home and 
community-based services were where you lived.
    My question is how important is it that we invest in home 
and community-based services across the nation?
    Mr. Kingsmore. Well, if you think about the growth of home 
care, it is growing at such a fast pace. I think home care 
right now is the fastest-growing industries, and one day we are 
all going to need help, whether we want it or not.
    This is something that should be address. We should not be 
fighting for it in the 21st century. My only goal is that 
people will understand that it is not about dollars and cents. 
This is about life and death.
    Without these home care services; my life would not be what 
it is and I would not be the man I am today.
    The Chairman. Well, Brandon, thanks. The story you told 
about the concern you had about your mom, who was working full-
time and providing care full-time, I think is instructive for 
all of us, that so many families are making those sacrifices, 
and the difference that Medicaid made in your life, as you 
said, made a big difference.
    We will turn now to Senator Braun for his questions. 
Senator Braun.
    Okay. Why don't we move to Senator Gillibrand.
    Senator Gillibrand. Thank you, Mr. Chairman. I appreciate 
it, and thank you for holding this essentially important 
hearing. I really appreciate the topic.
    Some 20 million Americans already require long-term care. 
With roughly 10,000 people turning 65 every day, we will need 
to fill an estimated 4.7 million home care jobs by 2028. Today, 
more than 1 in 5 Americans are family caregivers, having 
provided care to an adult or to a child with a disability at 
some time in the last 12 months.
    It is clear that we need to ramp up our investment and 
improve the availability of home and community-based services 
and our care infrastructure for many more Americans. That is 
why I am a champion of--sorry, that is Maple--that is why I am 
a champion of Senator Bob Casey's Better Care Better Jobs Act 
and its commitment to a massive care infrastructure investment 
as well as my proposal for a national paid leave program.
    Ms. Tumlinson, how do the diverse needs of older adults and 
people with disabilities inform the need for improving 
availability of a wide range of home and community-based 
services? Does our care infrastructure and workforce meet all 
the needs from all people with disabilities? Are people falling 
through the cracks?
    Ms. Tumlinson. Thank you, Senator. That is a great 
question. It is almost a hallmark, I would say, of our 
patchwork, undeveloped system, the extreme inconsistencies in 
access across nearly every facet that you can imagine, so 
across states, within states, rural versus urban, racial 
disparities, age disparities. Accessing home and community-
based services often can just be a question of are you living 
in the right neighborhood, in the right State, with the right 
set of needs.
    The averages that we see in the national data, they mask 
really big differences, and overall just obscure the fact that 
certain populations are very much being left behind. Rural 
areas, in particular, struggle with supply of agencies and 
providers due to drive time. We see Black individuals using 
nursing homes that are lower quality a lot more frequently than 
white nursing home residents, and we see them lacking access to 
more private pay options such as assisted living.
    It is very much a hallmark of our system, the unevenness of 
the access to services.
    Senator Gillibrand. Yes, that is what we have seen in New 
York as well. We know that, again, for Ms. Tumlinson, we know 
that paid family medical leave, a crucial necessity for workers 
facing their own or their families' health issues, positively 
boosts the economy. We know that workers spend the wage 
replacement income they earn, which leads to further job 
creation and labor income for workers in various sectors. The 
widespread lack of paid leave disproportionately affects women, 
people of color, and low-income workers.
    Would you please describe how national paid family and 
medical leave might help address these overwhelming, growing 
demands for caring support and long-term care?
    Ms. Tumlinson. Sure. I will just start first by saying that 
I have personally been away from work for an estimated month 
out of the last three, very recently, helping my 81-year-old 
mother take care of my father at the end of his life, and 
fortunately for me I have access to paid leave--I am the owner 
of the business so I have a lot of control. I have wonderful 
coworkers who have covered my work while I have been out, but I 
am so far from the norm, and we are essentially on the 
precipice of essentially having to build what I call a 
caregiving society, and I love what Lynn said earlier, 
``Without care there is no life.'' I am going to use that and 
quote her often going forward.
    This is what we will all be doing soon, whether we are paid 
or unpaid. We will be delivering care and receiving care, and 
even if we, and when we, succeed in making these new 
investments in infrastructure through the Medicaid program, 
families will still experience crises and other needs that 
require their attention, and paid leave must be the norm and 
not the exception or we are just going to see even more sort of 
extreme economic insecurity as a result of having to make very, 
very difficult choices between work and taking care of family 
members.
    Senator Gillibrand. Thank you, and just one question for 
Mr. Kingsmore. Thank you for sharing your experience. Could you 
describe how investments in care work and Medicaid home and 
community-based services translates to improved health 
outcomes?
    Mr. Kingsmore. Yes. It would be great for both parties, 
both for the caregiver and the client as far as money to pay 
for gas, better training, more opportunities. It would be 
better for the workforce because a lot of people quit their 
jobs because of lack of funding or they do not make enough 
money.
    If they had the proper things that they need I do believe 
that the workforce would be better off and both parties would 
be benefit.
    Senator Gillibrand. Thank you very much and Thank you, Mr. 
Chairman.
    The Chairman. Thank you, Senator Gillibrand. Before turning 
to Senator Braun I just wanted to make sure that we acknowledge 
some folks. We are obviously acknowledging folks that have 
appeared at the hearing and have their camera on, and then some 
may have to leave and come back in a different order, but I 
know that we were joined earlier, and maybe still, by Senator 
Rosen and Senator Blumenthal, but we will turn to Senator Braun 
and then we will see where we are with the next Senator.
    Thank you, Senator Braun.
    Senator Braun. Thank you, Mr. Chairman. My question is 
going to be for Ms. Harootunian, and it is going to be related 
to, in 2020, Federal Government increased funding for Medicare 
and Medicaid spending, over $1.5 trillion on health care 
services. CMS has also issued waivers of Federal requirements 
to expand beneficiary care access at this time. As a result, 
the GAO identified several risks to program integrity, due to 
the suspension of these safeguards, increasing chances of 
fraud, waste, and other abuse.
    In your opinion, the drivers of health care spending and 
poor clinical outcomes for older and disabled Americans, has 
increased spending actually addressed, in measurable ways, 
improving the outcomes, and has the usage of waivers 
complicated matters as well? I would like you to focus on the 
amount of money we are spending, are we getting better outcomes 
since we are borrowing so much of it each year, and then weigh 
in on waivers as well.
    Ms. Harootunian. Thank you, Senator. Increased spending 
does not always equal better outcomes. It is important that 
spending be targeted in the right ways to promote quality 
outcomes, you know, a lot of times ensuring that care is 
integrated, it is easy for beneficiaries to navigate and 
access, and ensuring that the delivery of those services is 
efficient and optimized and that there is less complexity in 
the system can help make sure that those services are 
accessible and delivered in the best way possible.
    Senator Braun. What about the waivers? What has that done 
to the complexity of trying to get everything to work as well? 
Would you comment on that?
    Ms. Harootunian. Yes, so right now, as I mentioned, some 
states can rely on up to 11 1915(c) waivers, and that is just 
the 1915(c) waivers. On top of that you have got the 1115 
waivers and then the variety of State plan amendments that 
states are relying on. This creates lots of complexity for 
states using multiple waivers and State plan amendments. They 
have to administer multiple programs and benefit packages with 
different eligibility, reporting, and other requirements, and 
each waiver is only for a limited time, and states have to 
periodically submit renewal requests to CMS.
    Given this variation in length of each waiver, those 
renewal processes can require significant staff bandwidth at 
the State Medicaid level, and it is burdensome for states, so 
adding to the complexity of that, states also need to oversee 
multiple contracts and contractors, manage several waiting 
lists, and oversee different sets of quality metrics for each 
of these waivers.
    Senator Braun. One final question. I have been a proponent, 
since I have been in the Senate, of reforming health care from 
the bottom up. Hospitals, insurance companies, practitioners, 
pharma, all of that amounts to about 18 to 20 percent of our 
GDP, depending on how you actually measure it. Most other 
countries are more in the neighborhood of 10 to 12 percent.
    In your observation, what are the most critical things you 
could do, generally, to make health care more affordable, 
whether the government pays for it or private insurers do, 
through employers? What would be a couple three things that 
would bring the cost down for everyone?
    Ms. Harootunian. One thing that we are focused on is, 
again, reducing complexity in the system. To the extent that 
you can simplify and streamline those existing authorities that 
states are using and make those processes more efficient and 
less burdensome, have them require less staff time and less 
bandwidth to accomplish that, you know, you can get greater 
outcomes and promote some better results there.
    Senator Braun. Very good, and I would add to that that I 
think the whole industry needs to embrace full transparency in 
competition. That would especially be helpful to fully insured 
plans in the private side of how we pay for health care, and I 
think it would address maybe some of the imbalances I see out 
there in terms of some providers saying they do not get enough 
from Medicare and Medicaid, and then through the private side 
of insurance as it weighs into health care, prices are 
exorbitant.
    We will not solve it today. Thanks for weighing in on this 
component of it.
    The Chairman. Senator Braun, thanks very much.
    I know we are waiting for a number of Senators to either 
get back to the hearing or to get ready for questions, so I 
will move to what is only my second question. I am reclaiming 
some of my time from earlier so we can keep the hearing moving.
    I wanted to turn to Ms. Shaheed. Your personal story is a 
great American story of hard work and sacrifice and overcoming 
so many challenges, and I just wanted to commend you for 
telling your story, because when you tell your own story you 
not only inform us but you inspire others to tell theirs and to 
move the ball forward on public policy.
    You talked about how home-based services keep you in your 
apartment and living an independent life, which you said is 
most important to you. You also noted, and I am quoting you, 
``I am approved for help for 35 hours of work right now. I can 
only find an aide for 20 hours a week. Since January of this 
year I have not been able to find an aide to come on Saturdays, 
Sundays, and Mondays,'' unquote.
    That is obviously a significant decrease, and as you 
stated, has led to you going days without receiving care.
    You also shared that as a result, ``This means I am unable 
to shower for 3 days.'' There is no excuse in the United States 
of America for someone living in our country going that long 
without basic care, and the tragedy here is that Washington has 
not responded, most recently, but over many, many years, and 
that is why we are advocating in such a determined fashion to 
finally--finally--as a matter of national policy, to fund home 
and community-based services so that people have a chance to 
receive these services at home.
    You know, a lot of people may not realize but we already 
made a decision decades ago to use the Medicaid program as a 
way to provide long-term care to families, right? That is not 
limited to families that are low income. A lot of middle-class 
families benefit from Medicaid. They get their nursing home 
care. Middle-class families get their nursing home through 
Medicaid. I cannot say that enough. I might say it again later 
in the hearing, because people in Washington do not seem to 
hear it.
    It is not a question of whether Medicaid is going to 
provide funding for care, for long-term care. It is a question 
of whether Americans are going to have a choice to get the care 
in the setting that they want, the setting that is preferred by 
many--not all, but many--which is home-based care, so that is 
what we are talking about here. We are either going to 
validated that choice or we are not. Washington has not done 
that so far.
    Ms. Shaheed, sorry for that long prelude but how would 
raising wages for workers impact the availability of home care 
workers that provide the type of care you receive?
    Ms. Shaheed. Yes, Senator Casey. Thank you so much for 
having this hearing and for bringing these issues to the 
forefront. Having the wages increased of the home care workers 
would give me a greater quality of life. My dignity suffers, 
and my health suffers, when I am unable to shower for 3 days. I 
am isolated. I am not able to participate with a lot of 
community here in my apartment complex because I am not 
comfortable going in a setting with my friends and I have not 
had a bath in 2 days.
    The increase in the wages is the key. That is the key 
component as to why I do not have the help that I need. The 
wages that are being paid by Medicaid are too low, and the 
reason I have not had an aide to come on those days, the case 
manager called 12 different agencies. She called 12 agencies 
and was unable to find help to come on any of those days. She 
called 12, and then she called 5 more, but no one was available 
because no one is willing to work for those wages that are 
being paid, so the increase would increase my quality of life 
greatly. Thank you, Senator Casey.
    The Chairman. Thanks for making that point and for being 
willing to share your own personal story. Wages matter, and if 
we really care about older Americans, if we really care about 
people with disabilities, we are not just going to have some 
policy. We are going to have a policy that lifts up the wages 
of those workers to accord them the status that we claim to 
accord them as Americans.
    Everybody says we care about caring for older Americans. 
Everybody says we care about caring for children and people 
with disabilities, and yet the people who are doing the hard 
work every day are not paid a hell of a lot--$12 an hour is the 
average across the country. That is unacceptable in America.
    I will turn next to Senator Rosen.
    Senator Rosen. Chairman Casey, I cannot see if Ranking 
Member Scott is there, thank you as well for holding this 
important hearing, for the witnesses for being here today, for 
being willing to share your stories and do the work that you 
do.
    You know, I am a former caregiver for both my parents and 
in-laws, and so I understand the important role caregivers play 
in helping their loved ones continue to live independently in 
their own homes and even be able to thrive if they are in 
nursing home or assisted living or memory care, as my mother-
in-law was.
    I have heard from constituents across Nevada, including 
caregivers represented by SEIU, about the many struggles of 
being a caregiver, a full-time, physically and emotionally 
demanding job. That is why I was so proud to stand with 
Chairman Casey in co-sponsoring the Better Care Better Jobs 
Act, which, among other important things, would support the 
HCBS workforce, including by significantly strengthening worker 
protections. I also co-sponsored the Credit for Caring Act, 
which would provide caregivers with a Federal tax credit of up 
to $5,000 to cover expenses associated with caregiving. If you 
are caring for a loved on--parents and in-laws, like I was--
that could make quite a difference for families.
    Building on what all of my colleagues have mentioned here, 
Ms. Weidner, as a home care worker represented by SEIU, can you 
tell me how you feel about having those worker protections, 
union representation that supports you on a day-to-day basis, 
and what else do you think that we can do here, in Congress, or 
all of us can do to prioritize to work on both the economic and 
mental and emotional support to caregivers like you who are 
going in to so lovingly help others live a productive life? It 
is just invaluable what you do.
    Ms. Weidner?
    Ms. Weidner. Thank you. The first thing I would like to say 
is that sometimes home care can be extremely isolating. We work 
by ourselves. You know, we disappear into the background 
sometimes because we are in people's homes. We are not in the 
facility. There is no people touring.
    One of the things that I noticed specifically, for myself, 
is I worked in two different states in home care, in North 
Carolina and then we moved here to Pennsylvania. In North 
Carolina I did not know any other care workers. I was 
completely alone.
    When I moved to Pennsylvania I found out that there was a 
home care workers' union, and in joining the union I found a 
community. My union siblings are my friends and my support. 
Honestly, I do not know how I would have survived the pandemic 
and all these anxieties and lack of resources without them. We 
were mailing gloves across the State to each other. We were 
sharing masks, if somebody knew how to sew, because those 
resources were really hard to find.
    In Pennsylvania, we were able to start a training program. 
We were able to help home care workers learn skills we need to 
keep ourselves and clients safe. This is because of the 
advocacy of the home care workers' union. It did not exist 
before we had to start fighting for it.
    Congress needs to prioritize passing this funding because 
we cannot think of this as like just individual elements. We 
need to tackle everything all at once. It will direct more 
funding to programs that are directly supporting us, like wages 
and training and accessible care. In our union were able to 
win, this year, 8 percent raises for home care workers, and 
that is something, you know, I really appreciate, but I am not 
bumped to $13.50 an hour. It is still not enough. I can walk to 
Taco Bell and make $15 an hour, but if I have a human life in 
my hands and if I am providing them care, you know, it is 
$13.50. Does that mean that my labor is less important? I do 
not think it does. I think that we are important. I think that 
we need to increase funding so that we can make sure that not 
only the workers are taken care of but also our consumers. 
Thank you.
    Senator Rosen. You know, I think you hit it right on the 
head there. You are important. The work you do is important. 
You talked about community and having a network of people that 
you work with so that you can learn from each other and grow. 
Community matters. It matters for the people you care for and 
it matters for all of you workers.
    I know I just have a few seconds so I will take my answer 
off the record, but what I was going to ask Ms. Shaheed is 
about lack of standardized workplace protections for people who 
work in home care center, like Ms. Weidner. It is, 
unfortunately, a transient field with high turnover, and there 
is really a burden in finding new caregivers and making sure 
they have the protections when they go into someone's home to 
care for them.
    I will submit these for the record. I appreciate you all 
being here, and I will support you every way I can. I know what 
it feels like, and I know what it means. I know what it meant 
to my family, and you always will have my support. Thank you.
    The Chairman. Senator Rosen, thanks very much for your 
questions. I know we are going to be turning to other Senators 
as they appear. In the interim, I wanted to pose a question to 
Ms. Tumlinson.
    In your testimony you talked about your work with 
Daughterhood and gaps in services for family caregivers. You 
noted how that compelled you to develop a platform to connect 
family caregivers with one another and to connect them to other 
resources.
    As we noted earlier, over 53 million family caregivers 
across the country are taking care of their loved ones, 
including 1.6 million in my home State of Pennsylvania. While 
many Americans gladly take on these responsibilities, it is 
really an act of love that they take on these responsibilities 
over and over again.
    Family caregivers often shoulder many, many burdens. I 
cannot even imagine. I never had to do it myself, but so many 
have, so these burdens can include enormous financial costs, 
lost wages when they leave the job that they are in to care for 
a family member or a loved one. They can also forego, and often 
do forego, promotions at work because they are not there. They 
are home or they are in a family member's home taking care of 
them. Some are forced to leave the workforce altogether.
    Ms. Tumlinson, how would an investment in home and 
community-based services fill some of the gaps in care and 
enable family caregivers to return to work?
    Ms. Tumlinson. Thank you. Thank you for that question. I 
always say, when I am talking to people about what it is like 
to be a family caregiver, it is really like all across the 
country right now every single family is essentially building 
and creating an entire system of care delivery, from scratch, 
all alone. That is what everyone is doing right now. It like we 
are homesteading long-term care, essentially, in this country.
    This investment--an investment, and I love that word, 
because it implies that we are preparing strategically for the 
future, not just throwing another Band-aid on the problem. We 
are thinking strategically, as the Federal Government, as a 
State, as the private sector, about what we need to do to 
prepare.
    When I talk to family caregivers, essentially what they 
need, and what we would invest in, I think, as a country, is 
kind of the four cornerstones of the infrastructure, which is 
an increase in the services that are available to individuals 
who qualify, but more importantly, reforming the eligibility 
system so that we do a better job of identifying people who 
have financial and functional needs, so that we can qualify 
them for services in the first place.
    Obviously, and we have talked about this, many others have 
talked about this, the importance of workforce and compensation 
of wages and training in order to prepare the workforce. That 
is a huge gap that the families are dealing with, and then for 
everybody, not just Medicaid beneficiaries but for everyone in 
the country we have to build a strong infrastructure so that 
there is a place to go in your community, where you could be 
supported and helped along this journey, regardless of how you 
are paying for the services.
    The Chairman. I appreciate that. Thank you.
    Senator Warnock--we are joined by Senator Warnock. Thank 
you.
    Senator Warnock. Thank you so very much, Chairman Casey. I 
am glad to be here to address the issues facing the caregiving 
economy in our country. Home and community-based services, 
HCBS, helps older Americans and people with disabilities live 
independently and to live lives with dignity.
    This has been especially important during the pandemic, or 
at least the pandemic has pulled these issues into sharper 
focus, when older and vulnerable folks were able to stay at 
home with their caregivers instead of being crowded, for 
example, in a nursing home, and nursing home are an important 
part, obviously, of the ecosystem of care, but in the pandemic, 
home and community-based services allowed people to be at home, 
and therefore, to mitigate risks around COVID-19.
    There are tens of thousands of Americans who likely qualify 
for this service but are not able to get it because the program 
does not have enough money. For example, in Georgia, we have 
about 8,000 older folks and people with disabilities waiting to 
receive this at-home care. For me that is unacceptable.
    Ms. Tumlinson, I want to ask you about waiting or planning 
lists for HCBS. As you know, nearly every State offers at least 
one kind of HCBS waiver that allows folks to get care at home 
rather than in a nursing home. How can Congress get those 8,000 
Georgians, folks I represent, off the waiting list and into 
care and services?
    Ms. Tumlinson. Thank you. Thank you for that question. 
These waiting lists represent real need and desperation among 
many families. Those numbers are really concerning, and the 
truth is unfortunately even worse news is that there are lots 
more people in need than are on even the waiting lists, so 
depending on the State, you know, we may or may not really be 
measuring the true effect of unmet need in that State.
    What states tell me is that the most important thing, from 
their perspective, in building up their systems and services so 
that they can serve everybody who has need and qualifies for 
services is having financial predictability and having sort of 
the certainty about the funding, so I think from my perspective 
the best thing that Congress can do to help Georgia and other 
states with meeting that unmet need that is represented, in 
part, by these waiting lists, is to increase the Federal match 
rate, to give them essentially the money that they need. You 
know, not just for funding the services but also for doing the 
planning and the infrastructure development that they need to 
do to make sure that the delivery system is there to actually 
serve people when they come off the waiting list, so we have to 
have that kind of ready to go, so those two things are 
important and states really need it. It is very, very hard for 
them to prioritize this from a staffing perspective or even 
from a budgetary perspective if they do not have that support 
from the Federal Government.
    Senator Warnock. Thank you so much, and I agree, and it is 
the reason why I am so focused on this issue and engaged trying 
to co-sponsor the Better Jobs Better Care Act, a piece of 
legislation that would be helpful.
    Medicaid is the primary source of coverage for long-term 
services and supports in the United States, accounting for 52 
percent of all spending on long-term care nationwide. The 
majority of this spending goes toward the home and community-
based services program, which typically involves assistance 
with activities of daily living, like cooking, bathing, 
housework, essential things, and this is obviously limited to 
folks eligible for Medicaid, meaning there are many in Georgia 
who are not able to receive this support because Georgia 
continues to refuse to expand Medicaid, leaving hundreds of 
thousands of Georgians unable to receive these benefits.
    Mr. Kingsmore, you are currently a recipient of Medicaid 
HCBS. What would happen if you lived in Georgia and were not 
eligible for these services?
    Mr. Kingsmore. I would be in a home. I would be trapped in 
a system that did not care. People get shoved in the corner and 
are unable to live the way they want or how they want. I am 
glad that I live in Pennsylvania, but we are supposed to be the 
greatest country on the face of the earth. Something needs to 
be done, especially the older generation, because--we are 
important too. We are not supposed to be stuck in a home or 
trapped in a system that does not care about us. We are 
supposed to be the greatest country in the world, being 
prepared for something like this. It has been going on for far 
too long and it needs to change.
    Senator Warnock. Thank you so very much, and what you 
describe as what would be your situation if you lived in 
Georgia is a situation of a number of Georgians, so thank you 
for your voice and courage on this. It is the reason why we 
have got to continue to try to find and fix it. Ten years after 
the Affordable Care Act was passed, Congress has to close the 
loop and make sure that people have access to Medicaid, 
including folks who could benefit from home-based care.
    Thank you so much.
    The Chairman. Thank you, Senator Warnock. I appreciate you 
being here, and thanks for your advocacy.
    We will turn next to Senator Warren.
    Senator Warren. Thank you, Mr. Chairman, and thank you for 
holding this hearing and for your steadfast advocacy on this.
    We know that the majority of adults and people with 
disabilities want to live at home. We also know that chronic 
underfunding of home-based services has taken this option off 
the table for many, and it has left hundreds of thousands of 
people on waitlists all across this country.
    The failure to invest in home-based services not only harms 
people who need care, it also harms the workers who deliver it. 
Home care workers who are more likely to be women and people of 
color earn a median wage of just $12 an hour, and they are 
three times as likely to be in poverty compared to other 
workers, and they are less likely to have employer-sponsored 
benefits, like health care and paid leave.
    The COVID-19 pandemic has made these challenges even worse, 
as caregivers have delivered essential services in jobs where 
social distancing was nearly impossible and personal protective 
equipment was alarming scarce.
    Ms. Weidner, you have shared that as recently as last year 
you were earning $12 an hour as a home care worker. Can I ask 
you to say a word about how that has affected your financial 
security?
    Ms. Weidner. Yes. Thank you. The low wages in home care 
have been really difficult. It usually means I need to work 
more than one job to make ends meet. I am working more than 80 
hours a week. I do not have days off. I get paid 8 hours a day 
but I really provide 24-hour care, and a lot of that means that 
I end up in a lot of debt. A lot of it is medical debt, but 
there is others as well, and it is nearly impossible to climb 
out of that debt when you are living paycheck to paycheck. It 
is emotionally and physically taxing, and then having that 
financial stress looming over you just makes it that much 
harder to get into the correct headspace to complete my job the 
way I want to.
    Senator Warren. Wow. Well, I very much appreciate you 
sharing that.
    You know, under these conditions it is no surprise that 
states are reporting a shortage of dedicated home care workers, 
and despite the growing demand for home-based care, the 
turnover rate in direct care jobs is as high as 60 percent.
    Ms. Shaheed, you have spoken about the shortage of home 
care workers where you live. How has this affected your ability 
to get the care that you need?
    Ms. Shaheed. Senator Warren, thank you. You are asking how 
has the shortage affected me?
    Senator Warren. Yes.
    Ms. Shaheed. The shortage, greatly, because I am unable to 
access--without the home health aide coming into my home and 
assisting me with my daily living, my world slows down to where 
I am not able to access outside of my front door, because I am 
totally dependent on them to do things for me that I am now 
unable to do for myself.
    The shortage--my quality of life goes downhill when I do 
not have the home health aide coming into the home to assist me 
with those things that I need to do in order to be living 
independent. The shortages are just--things are not well 
because of the shortage of workers, and there is a shortage of 
workers because there is low pay, and until that is resolved, 
it just continues.
    Senator Warren. Yes. I appreciate your underscoring this, 
and I think Mr. Kingsmore said earlier that if he could not get 
access to home-based care then he would be forced to live in a 
nursing home or he would be back home without the quality of 
life that he has now.
    You know, I worry about the fact that too many people are 
forced into nursing homes or other congregate care facilities 
because they cannot access the care they need at home, and the 
pandemic has just made clear how devastating the consequences 
of those decisions can be.
    As of January, 23 percent of all COVID-19 deaths in the 
United States happened in long-term care facilities, so right 
now Congress is considering legislation that would make an 
historic investment in home and community-based care to ensure 
that more people can access these services, and that starts 
with training home care workers like the essential workers that 
they are, by paying home care workers a living wage, by 
providing them with good benefits, by ensuring that they have 
the right to join a union.
    Ms. Weidner, I know we are running out of time here, but 
can I just ask you just to say a word about what those 
investments would mean for you and for the people around you.
    Ms. Weidner. Yes, absolutely. I mean, an increase in 
funding for home care would change absolutely everything, 
honestly. I mean, having access to a living wage and benefits--
I do not know what a day off is. Health insurance is incredibly 
expensive for me on the marketplace right now, and most home 
care workers cannot even afford it, so we are health care 
workers that go without health care.
    It would mean turning home care jobs into a professional 
health care career. That means that we would increase the 
workforce. People would be able to stay in their jobs, and that 
means that people would be receiving care, the care that they 
need and the care that they want. Families need this investment 
and care workers need this investment as well.
    Senator Warren. Well, you have put it very well, and thank 
you very much for that summation of what is going on here.
    Home-based care is essential infrastructure for families. 
These investments provide necessary financial security for home 
care workers. They ensure that more adults and people with 
disabilities live in dignity, in the setting of their choice, 
and they would allow unpaid caregivers who have taken leave 
from their jobs to care for a loved one to be compensated for 
their work or to return to the workplace if that is what they 
wanted.
    As our population ages, demand for home-based care is only 
going to increase, so the time for us to act is now. I am ready 
to join you, Mr. Chairman, in getting this done.
    Thank you.
    The Chairman. Senator Warren, thanks very much for being 
with us today and thanks for your questions and your advocacy. 
We have work ahead, and this hearing helps us light the path 
forward for that work, but thanks for working with us on this.
    I do not think we have other Senators who are waiting to 
ask questions, so in the interest of keeping everyone's time in 
a more efficient fashion I think what I will do is close and 
note for the record that we will have the hearing record open.
    I wanted to start by thanking each of our witnesses for 
their testimony today and also for their willingness to appear, 
and to tell their own stories. It is not always easy to tell 
people about your own life, your own challenges, your own 
struggles, and we hope in some cases your own opportunities 
that you can be very positive about, but too many families are 
not provided the opportunity for these kinds of services, for 
home and community-based services, whether they are a senior or 
a person with a disability.
    I wanted to thank our witnesses for being with us today and 
sharing not only their stories but also their expertise, 
whether that expertise is gained personally, through your own 
life, or the expertise of long years of study of these 
important policy issues.
    Before closing I wanted to highlight a new report from the 
Community Living Policy Center at Brandeis University. This 
report is entitled ``Reducing Costs for Families and States By 
Increasing Access to Home and Community-Based Services.''
    This particular report cites AARP data that indicates that 
6 in 10 family members have had to reduce or quit their 
employment to care for a loved one--6 in 10 family members who 
have had to reduce or quit their employment to care for a loved 
one, so those numbers are not just significant when you 
enunciate the number. You can see the impact it is having all 
across America.
    This means that these family members have had to reduce 
their family income to care for a member of their family. As I 
said earlier, it is an act of love, and they are happy to do 
it, but we should not continue to put them in the position of 
having to reduce their income or having to leave their job. 
Lack of available care in America means these families that 
have this challenge will have less income and greater expenses, 
so increasing the investment in home and community-based 
services can send family members back to work.
    I believe, in the U.S. Senate, we have some basic 
obligations, year in and year out, and among those obligations, 
I believe, are the following. We have an obligation to lower 
costs for families, Senators have an obligation to create jobs 
that will sustain families, and, of course, we have an 
obligation to help Americans get back to work. All three of 
those obligations can be met for Senators supporting a policy 
that will increase our investment in home and community-based 
services.
    Many people remember the American Rescue Plan passed a 
little more than a year ago, March 2021, which included a new 
investment in a great American idea--home and community-based 
services. That was kind of the first new funding we had for 
these services in a generation, and that was just the start, 
but we need a much greater investment to make this a reality 
for so many families. As we have heard today, we have got to 
build on this initial investment in the Rescue Plan, and we 
need to do it now, this year, to bring relief to American 
families.
    In the end this is about all of what we talked about. It is 
about better care for seniors and people with disabilities. It 
is about better jobs for those who are doing that noble, 
essential, and heroic work, caring for folks in their homes or 
in the community, and it is also about providing a measure of 
relief to those tens and tens of millions of Americans who are 
providing care for a loved one every day, leaving their jobs, 
increasing their costs to do that. They should be the 
beneficiaries of the work of the U.S. Senate.
    We are grateful today for our witnesses and for the 
Senators who attended and for those who are lifting up these 
policies to have us, as Americans, not just meet the 
obligations that public officials have but to create the 
America that we hope to have.
    We all say we care about seniors. We all say we care about 
people with disabilities. Then should we not, at least, provide 
a measure of funding so that these Americans, who in many cases 
have worked their whole lives, and all they are asking for is 
an opportunity to choose the setting within which they receive 
their care, in the home or in the community. Some may choose to 
have their care in a nursing home or a long-term care facility 
of another kind. That is their choice, but that should not be 
the only choice, and in America, unfortunately, for too many 
Americans that is the only choice.
    We have a long way to go. We have more work to do, but this 
hearing helped us lift up seniors and people with disabilities 
and their needs and helped us lift up those workers who are 
doing this work and those families who are struggling every 
day.
    Thanks very much for your time, and our hearing is 
adjourned.
    [Whereupon, at 11:33 a.m., the Committee was adjourned.]

    
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                                APPENDIX

      
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                      Prepared Witness Statements

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                        Questions for the Record

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                       Statements for the Record

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