Florida Health Justice Project's Comment regarding March 23, 2022 Hearing on "An Economy that Cares the Importance of Home-Based Services"
Senator Bob Casey
U.S. Senate Special Committee on Aging
Senator Tim Scott
U.S. Senate Special Committee on Aging
Via email: SFR@aging.senate.gov
RE: U.S. Senate Special Committee on Aging (“the Committee”) March 23, 2022
Hearing on “An Economy That Cares: The Importance of Home-Based Service”
This statement is submitted by the Florida Health Justice Project (FHJP), a nonprofit
health advocacy organization whose mission is expanding access to healthcare with a
focus on Florida’s most vulnerable populations. Accordingly, we prioritize work on behalf
of low-income frail and disabled seniors who require Medicaid home and
community-based services (HCBS) in order to remain safely at home and out of an
institution. Among other things, FHJP has published an advocate’s guide and a
consumer video that explain this complex and critical program for vulnerable Floridians
and their families. We also work with clients on individual appeals and with those who
wish to share their stories underscoring the lack of resources in this critically
On behalf of our clients, storytellers and the other marginalized Floridians who need
Medicaid HCBS, we extend heartfelt thanks to you and your staff members. We
understand that you are all incredibly busy, and we are extremely grateful to the
Committee for holding this hearing. We are especially grateful that you invited Alene
Shaheed to testify. FHJP has worked with Alene for several years–both on resolving
her individual appeal when her managed care plan cut her services and on the systemic
issue of enrollees suffering ongoing gaps in services. Alene’s testimony eloquently
described what it’s like to go days at a time without any home health aide coming to
help with the basic activities of daily living. She was also profoundly clear about the fact
that Medicaid home health workers must be paid more in order to resolve the problem.
The suffering caused by untenably low worker pay is obviously a national problem, and
any meaningful effort to improve the situation will require Congressional action. Given
the import of the program and the urgent need for increased resources, FHJP and two
of our state partners shared this letter with Senators Rubio and Scott, as well as all of
our Florida representatives on July 13, 2021. The letter, which was signed by over 400
Florida organizations and individuals, noted that most people who need Medicaid HCBS
end up on a waiting list, currently over 60,000 Floridians. It also described how the
severe underfunding of home health workers is hurting those who, like Alene, managed
to get off the waitlist and enroll in one of the state’s HCBS programs, but who still
cannot get the care they need. As Alene testified, this results in dire situations as
profoundly vulnerable program enrollees, including those who are incontinent and need
assistance to change, bathe etc., are left without any help for days. Another former
FHJP client, Shirley, who was bed-bound following a stroke, relies entirely on
home-health aides to operate the special lift to get her out of bed. Like Alene, her
Medicaid managed care plan is unable to find aides to take care of her on the
weekends, forcing her to stay in bed for the entire weekend and increasing her risks for
bed sores and skin infections.
We also appreciated the Committee’s focus on the need to adequately compensate
family care caregivers, and/or provide sufficient funding for home care workers so that
family members can rejoin the workforce. Another former FHJP client, Thelma,
illustrates this need. Thelma quit a good job to care for her elderly mother who requires
24/7 care. Especially in light of all the nursing home deaths due to COVID-19, Thelma
adamantly refused to put her mother in a nursing home and there was no alternative
other than to quit her job. Although Thelma was promised 41 hours of pay, the
managed care plan continued to cut her hours as her mother’s Alzheimer's progressed
and her health worsened. Although FHJP successfully represented Thelma in an
appeal, most enrollees whose services are denied, terminated or reduced, do not
receive free legal assistance, and the vast majority either do not file an appeal or they
lose their pro se appeals.
We are grateful that both Florida senators (copied on this letter) are on the Committee,
and we are hopeful that they will play a role in helping to secure needed additional
resources. Senator Casey, we are also grateful that you underscored the fact that most
seniors who need HCBS were once middle class, and that most long term care in this
country is provided through state Medicaid programs. We also want to underscore that
home-based services provide a much less expensive alternative to nursing facility care.
The March 23 hearing did a wonderful job in documenting the national need for
increased Medicaid HCBS resources. The Better Care Better Jobs Act (BCBJA) will
help provide states with funding to build the necessary HCBS infrastructure and
support front line workers and family caregivers.
We urge the Committee to keep educating other members of the Senate on the need to
pass this investment as soon as possible.
Thank you again for all your time and all that you do. Please do not hesitate to contact
me if you have any questions.
Florida Health Justice Project
Advocacy Director & Founder
Cc: Senator Marco Rubio, c/o Varela, Jaime (Rubio) <Jaime_Varela@rubio.senate.gov>
Senator Rick Scott, c/o Hots, Jared (Scott) <firstname.lastname@example.org>
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