Brandon Stone (center, seated) has been able to grow up at home among his parents and siblings due to home care nursing. Turning 21 has threatened his ability to continue with that care.
For most people, turning 21 is a milestone to celebrate. But
the State of Rhode Island is putting undue pressure on medically complex Rhode
Islanders who are turning 21. For those who receive home care services under Medicaid,
such as the Katie Beckett waiver, their medical coverage changes on their 21st
birthday, which affects who pays for their services, the types of services
available to them, and their state-authorized hours and funding levels. Without
proper planning and communication,
these changes can result in uncertainly of continuity of care and access to
home care services.
For young adults like Zach, Corinna, Brandon, and their families, turning 21 has been a source of significant stress and uncertainty rather than the celebration it deserves to be. Upon “aging out” of Medicaid, they have received word from the state that their care would be changing without much warning. Parents of medically complex individuals tend to be lifelong advocates on behalf of their children, and so all three have been able to retain their services on a month-to-month basis. “This is just a band-aid that covers the issue,” says BAYADA Home Health Care’s Government Affairs Director Ashley Sadlier. “Each month, they don’t know whether that band-aid will stay on or get ripped off. Everyone deserves to stay at home if it’s their wish to do so, and it’s arbitrary that a birthday is basically a penalization in Rhode Island.”
The interesting fact is that the State has already created a policy stating that home care children and their families are to be educated on their options by the age of 17. But Rhode Island has not upheld its end of the bargain: Families find that they receive little to no communication from the State, and that when they reach out to find out their children’s care options, the State is slow to respond and typically unable to provide proactive guidance to help families navigate this change . “Modern medicine and advances in home care have allowed for many children to live past the age of 21. That should be a reason to celebrate, not a reason to cut an individual’s services off suddenly,” says Corinna’s mother Michelle. “Home care saves the state money, and it keeps families together. Why would you put a child in danger when it’s clear that home care has enabled them to live their best life?”
Families, home care providers, and and other organizations across the state are currently working with the State to identify a solution. Without home care, clients stand a greater risk of infection, hospitalization, or even a permanent move to a skilled nursing facility. Parents know that a child doesn’t stop being your child when they reach adulthood, but it’s time that Rhode Island recognize this as well.
Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians
The facts are clear: Home care is less expensive than
hospital or other institutional care. Plus, it enables medically complex
children and adults to remain at home amongst their loved ones. But because the
State of South Carolina has not increased reimbursement rates for skilled
nursing home care services since 2008, families are finding it increasingly
harder to access the skilled, high quality care that they need to stay as
independent as possible in their communities.
State funding for home care has not been increased in more
than a decade. At the same time, hospitals and other facilities have been
steadily able to increase wages. Even more so, nurses can make more in home
care in surrounding states. Now, home care providers find that they can compete
for less than a quarter of all the nurses available in South Carolina. When
agencies face such recruitment and retention struggles, home care recipients and
their families suffer.
When there are less home care nurses available, families
find that they experience missed shifts, which can not only create undue stress
and chaos as loved ones must miss work, lose out on sleep, and forego other necessary
activities—but it also puts the client in danger. For those who need skilled
nursing care, missed shifts can mean dangerous consequences, including trips to
the ER and unnecessary hospitalizations.
Even more so, many major home care providers have already
left South Carolina because of the low funding for home care. Stagnant rates
that are more than a decade old make keeping their doors open unsustainable. As
more and more agencies leave the state, the harder it is for families to access
care. Simply put, if the State does not take action to increase funding for
home care, South Carolina’s most medically complex and vulnerable families will
have few options for care.
South Carolina’s concerned families are making their voices
heard: They are reaching out to their legislators and media to share their
message: Increase funding for home health care so that families can access the
high quality, reliable care that they need to be where they want to be: At
home.
To find out how you can get involved in advocacy, contact us
at advocacy@bayada.com today.
Indiana families like the Goellers are struggling to access the in-home nursing care they need to keep their medically-complex children safe at home
Indiana moms are coming out to share their message with State
decisionmakers: “Help us access the nursing care we need!” Recently, RTV6—Indianapolis’s
ABC affiliate—aired coverage of mom Annie and her daughter Emma. Emma, and
more than 14,000 like her across the state, rely on skilled nursing to live safely
at home, but often struggle to access it. The State has until June 30 to make a
decision to help alleviate families’ struggles by increasing funding for state
programs that pay for in-home nursing coverage.
The issue lies in State funding for programs that allow
families like the Goellers to access the skilled in-home nursing they need.
Because nurses can make more money in hospitals, rehab centers, and other
facilities, nurses are more attracted to those settings rather than home care.
The constant turnover creates a revolving door of nurses. In the past six
years, Emma, who has cerebral palsy, has had dozens of different nurses. “I
would say probably at least 20 or 25,” said mom Annie.
Such turnover means that Emma doesn’t see reliable, consistent
nursing coverage, which puts her at risk. For many families, this also means
that shifts are missed and parents must bear the burden of providing care. Lack
of sleep, calling out of work, and being unable to care for other family
members are all unintended consequences that come from the lack of skilled
in-home nurses.
No child deserves to grow up in a hospital or facility, and
no parent deserves to be an untrained nurse for their child. When we unite our
voices in advocacy, we can make sure that our message is heard and that decision-makers
and key influencers are aware of the issues that they have the power to make changes
on. Contact advocacy@bayada.com to
learn about how you can share your story and make an impact today.
ACSP Clients Jessie and Marie, and the impact their caregivers Indira and Marie make in their lives
HHA Indira (right) has made monumental changes in Jessie’s life
GAO and many other advocates are fighting for increased funding for New Jersey’s Personal Care Assistant (PCA) program. This program enables thousands of vulnerable New Jersey residents stay at home, and we are hoping that our advocacy efforts lead to fairer wages for caregivers like Indira and Michele.
Indira & Jessie
Indira is at Jessie’s home every morning at 5:00 without fail. After taking on Jessie’s case and learning that she spent most of her time in bed, it became Indira’s mission to consistently challenge her to get out of bed and get active. Now, every morning before dawn, Jessie starts her morning with a smile, anxiously waiting for Indira to arrive.
While helping Jessie, who is 31 and diagnosed with cerebral palsy, with her activities of daily living, Indira also incorporates games, crafts, dancing, and singing. After a few short months with her beloved caregiver, Jessie now has a newfound confidence in her physical abilities and communication and language skills. Indira has quickly ingrained herself as part of Jessie’s family, whose loved ones call Indira “a Godsend.”
Marie &
Michele
CHHA Michele (left) is “like a daughter” to her beloved client, Marie
CHHA Michele has been with her client Marie since January of 2017, but you would think they have known each other forever. They share a special bond, and Marie even says that Michele is “like a daughter” to her. Marie lives alone, and if not for Michele’s visits, would be lonely and potential in danger. In addition to the personal care services that Michele provides to keep Marie safe and healthy, you see their bond shine when Michele frequently makes puzzles and quizzes to stimulate Marie’s mind—or as they like to call it, “using our noodles.”
Marie says that without Michele, she would not be fully able to take care of herself. But As soon as Marie arrives at Marie’s door, the time flies as Marie keeps her on her toes—both figuratively and literally. In addition to regularly stimulating Marie’s mind, Michele makes sure that Marie is safe and on balance as she moves around her apartment.
We need your help in supporting dedicated caregivers like Indira and Marie through advocacy. To find out ways you can get involved, email advocacy@bayada.com today.
“Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” Two moms share how PDN impacts their families’ lives
This year, our major focus in New Jersey is to fight for higher reimbursement rates for New Jersey’s Private Duty Nursing (PDN) program. One of the most impactful ways to influence legislators is to engage clients and families into advocacy through testimony, which is delivered by these clients to legislators who are in key positions to influence legislators. Below, find powerful excerpts from two moms who support a PDN increase on behalf of their children and their families.
Dana I. – Mother to
BAYADA Client, Abi
PDN services help Abi stay safe and healthy, and helps her whole family stay together at home
“There is truly no way to explain on how much caring for a medically
fragile child impacts a family. Every errand, every event, every move of your
day becomes centered around their care. Abi has been authorized for skilled
nursing care by our insurance company, yet she still has five or more unfilled
shifts every week.
Lapses in nursing
coverage put tremendous pressure on our entire family—we often have to miss work
and stay home to provide for her care, putting strain on the family finances. Lost
nursing hours also means the entire focus of our time becomes all about our
medically-fragile child, and the balance between the other children becomes
strained and we often miss beloved activities or events.
Abi is not a child that
we can just hire a babysitter for. Her high level of care and constant need for
monitoring makes it impossible to have any sense of normalcy without capable
& consistent nursing support. There are simply not enough nurses in home
care to cover all of the needs of my family and the needs of many, many others.
Institutionalized care
is not the answer. My precious daughter brings many challenges to our home, but
it would be heartbreaking to have to put her in an institution for lack of
nursing support. So here I am prayerfully putting a name and a face to those of
you who have the power to make a real difference in this area. Competitive
wages would bring stability to her home care nursing and allow our family and
families like us to stay together and thrive.” -Dana Insley, Abi’s mom
Emma K. – Mother to
BAYADA client, Lili
Client Lili (left) loves her compassionate and reliable nurse Barbara
“While I count my
blessings that we have the right nursing team in place, I often think of the
families across the state that can’t fill their nursing shifts. It takes me
back to the last time our scheduled nurse had a family emergency and there was
no other nurse available to cover her shift. As a single mother of a
medically-complex, ambulatory child with no family in the area, you can imagine how it plays out when there isn’t a nurse available for
Lili: I have to call out of work myself and cancel any commitments I’ve made
for the day. I can’t get the groceries that I was planning to pick up or even
do a load of laundry since I can’t leave Lili alone for even a minute. And I
have to again plan to do these things during the times I’m expecting to have a
nurse to stay with Lili because I can’t get them done otherwise.
We as a society have developed a system of reliability for our communities: Teachers help children learn, police keep our streets safe, ER doctors save lives, and pharmacists fill our prescriptions. But we are failing in keeping home nursing readily available. Just as a prescription, Lili’s care is prescribed by her doctor and authorized by the state. But we cannot rely on its availability. I hope that our state decision makers prioritize home care, if solely for the fact that it keeps children like Liliana at home and keeps families together. Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” -Emma K., Liliana’s mom
Dana and Emma exemplify the power of sharing your story. If you’d like to highlight the powerful story of your experience in a home care office, or the story of a client, their loved one, or a caregiver, contact advocacy@bayada.com.
BAYADA’s Government Affairs Office (GAO) is proud to join with fellow advocates like you to continue to advocate for better wages for our caregivers and increased access to home health care for the tens of thousands of New Jersey residents that rely on this care to stay safe and independent at home. Thank you to our many employees, clients, and families who have advocated on behalf of yourselves, your loved ones, your staff, and your clients regarding our two major 2019 issues:
1. Personal Care Assistant (PCA) Program – Increased Reimbursements for Increased HHA Wages
GAO is advocating for HHAs like Indira (right) and clients like Jessie
GAO is working in collaboration with other providers and the New
Jersey Home Care and Hospice Association to educate our legislators on the
importance of adequate funding for the
Personal Care Assistant (PCA) program.This is especially important as the State recently mandated an increased
minimum wage. BAYADA supports a wage increase for all of our home health aides
(HHAs) for the incredible, lifechanging work they do—but additional advocacy is
necessary so state legislators understand the importance of proportional PCA
program funding so that providers like BAYADA can comply with the new mandate
and stay sustainable.
Click here to check out how HHA Indira helps her client Jessie stay at home, and about CHHA Michele’s special bond with her client Marie. We are hopeful that our advocacy efforts can lead to a fairer wage for aides like Indira and Michele, as well as better recruitment and retention rates across the ACSP practice so that all New Jersey residents who need this important service can access it. To find out how you can get involved, email advocacy@bayada.com today.
Increased PDN rates are important to ensure clients like Lili (left) can continue to have reliable nurses like Barbara (right)
GAO is working with the New Jersey Home Care and Hospice
Association to educate our legislators on the importance of adequate funding for the Private Duty Nursing (PDN) program.
Current PDN program funding makes it difficult for providers like BAYADA to
recruit and retain the nurses necessary to care for New Jersey’s most medically
complex and residents. This difficulty results in significant access to care
issues, as only 85% of scheduled hours are currently filled, and
vulnerable New Jersians are going without the care they need to stay safe and healthy
at home.
We are lucky to have home care supporters in the legislature who understand the struggles our caregivers and skilled nursing clients face—Recently, Bill S1733/A4575, which proposes a $10 per hour increase for RN and LPN home care services, was introduced. In addition to the increase, this bill also seeks to establish a “rate floor” so that managed Medicaid providers reimburse no less than the state fee-for-service rate for in-home skilled nursing services.
But we need your help in getting this bill to the finish line. Soon, this bill will be up for a hearing, and clients’ and employees’ testimony make the most impact in showing legislators the challenges that arise from inadequate funding and the associated access-to-care issues.
Click here to read excerpts from two clients’ testimonies regarding the importance of PDN in their lives. Powerful stories like the ones Dana and Emma share help our advocacy efforts and show legislators the impact of home care in making a real difference in vulnerable New Jersey residents’ lives. To find out how you can get involved, email advocacy@bayada.com today.
Last
year was Rhode Island’s first year with a full-time Government Affairs Office
(GAO) program—And what a year it was. Together with our Rhode Island office
staff, field staff, clients, and families, we were able to band our voices
together in advocacy to achieve monumental increases on behalf of our staff and
clients.
As a
result of our efforts, the State increased Medicaid rates for certified nursing
assitants (CNAs), and to the State’s private duty nursing (PDN) program. These
increases allow BAYADA to raise field workers’ wages and better compete for a
larger segment of the workforce. As a result, BAYADA is in a better position to
recruit and retain the staff necessary to keep up with demand, and Rhode
Islanders are poised to see increased access to reliable, consistent care.
Our
work is far from done. BAYADA’s GAO, along with the continued advocacy of so
many of you, is focusing on four key issues at this time:
Priority #1: Continued COLa Adjustments
GAO Director for RI and NY, Ashley Sadlier, testifies in support of COLa adjustments for home care workers
The
2018 increases also included a first-in-the-nation Cost of Living adjustment
(COLa), which will provide additional increases to Medicaid rates
every year based on the Bureau of Labor Statistics’ Cost of Medical Services
annual adjustment. Our first majority priority
for 2019 is to ensure that the state keeps its commitment to COLa and
includes it in the state budget each year. If passed, this year’s COLa will add
an additional 1.9% to current rates to ensure they remain consistent with
actual, determined cost of living increases. In March, GAO director Ashley Sadlier testified in support of this
important adjustment in front of the House and Senate Finance Committees alongside
other supporters. At this time, we see no opposition and continue to monitor COLa
through the state’s budget process.
Priority #2: High Acuity
Skilled Nursing Rate Modifier
RI representatives Patricia Serpa (left) and Mia Ackerman (right) introduce bill to increase home care rates for high acuity skilled nursing services
One major
issue that Rhode Island’s skilled nursing offices often face is recruiting the
specialty-trained nurses necessary for more complex, high acuity clients. Luckily,
home care supporters in the House agree. Recently, representatives Patricia Serpa and Mia Ackerman introduced House Bill
5621, which calls for a 10% increase to Medicaid reimbursement rates for nursing
services provided to clients with tracheostomies and/or ventilators. The bill
has taken the next step in the legislative process by being referred to the
House Finance Committee. Currently, GAO is awaiting a date for the bill to be heard.
If you, a loved one, or your staff or clients would benefit from such a bill,
please reach out to asadlier@bayada.com!
We hope to have a strong showing of support at the state house when the bill
moves forward and we would love your help.
Priority #3: Helping Pediatric Clients
Transition to Adult Clients
BAYADA is working with the State of RI to streamline processes for medically complex Rhode Islanders transitioning from pediatric to adult home care
BAYADA has collaborated
with the Rhode Island Partnership for Home Care (RIPHC) to advocate for
additional resources for pediatric clients currently receiving home nursing
services who are transitioning to adult services. Currently, clients that are transitioning face many challenges
navigating the system, especially when determining what programs and
services they are eligible for. BAYADA and the Partnership have met with the
Executive Office of Health and Human Services (EOHHS), the Department of
Behavioral Healthcare, and Developmental Disabilities and Hospitals (BHDDH) and
Managed Medicaid, to create plans on how
to streamline the process for this population and expand eligibility options
for families. To date, several BAYADA clients have transitioned to a more
appropriate program for the level of care that they require. GAO looks forward
to continuing to help our partners at the State to develop plans to ensure
parents, caregivers, caseworkers, schools, and agencies are equipped with the
resources necessary to assist families in navigating the challenges of
transitioning from pediatric to adult home care services.
Priority #4: Continued
relationship-building
BAYADA and the RI Partnership for Home Care meet with Rep. Joseph McNamara
While
2018 brought success to Rhode Island’s home care front, GAO continues to build
relationships to ensure that legislators and regulators understand the
importance of home care to so many of Rhode Island’s families, and support
policies that ensure its accesibility. Recently, alongside the Partnership, GAO
director Ashley Sadlier met with Rep. Joseph McNamara, the Chairman of the
Rhode Island House of Representatives Committee on Health, Education and
Welfare. Rep. McNamara is in a key role to influence legislation, and BAYADA looks
forward to continuing to be a valuable partner to Chairman McNamara—and many
other key legislators and regulators—on issues such as employee training and
supervision, access to care, and challenges that providers, employees, and
families see within the home care industry.
More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!
Delaware Ambassadors and employees have set participation records
at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day
and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).
The first, the Delaware Association for Home and Community Care
(DAHCC) Legislative Day on March 13, had a
record attendance of more than 50 attendees! 41 registered for the event,
which would have been a record itself, but the larger-than-expected turnout was
an impressive surprise. Seven providers,
including BAYADA, were represented, and the crowd included six families advocating for themselves
and their nurses. Everyone wore their own company’s branded gear but united
behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.
BAYADA employees made their voices heard in front of the DE Joint Finance Committee
In another first for Delaware, two legislators spoke in support
of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it
even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House
Majority Leader, Representative Valerie
Longhurst. Both spoke passionately about the importance of home care in our
communities and the need to increase reimbursement to ensure that this vital
care is available to those who rely on it.
They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.
A week later, on March 20, Delaware advocates broke another
record when 15 members of our community
testified before the powerful Joint Finance Committee (JFC) in support of
increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott,
Danielle Myers, Shannon Gahs, Dave Totaroand representatives
from Epic/Aveanna and Maxim/Aveanna. Client Haley Shiber was unable to attend in
person but sent a powerful testimony video to the JFC members before the
hearing. The Joint Finance Committee hears budget requests from all state
agencies and testimony from the public before making an annual budget
recommendation to the full General Assembly. The General Assembly frequently
follows the majority of those recommendations. Members of the committee told
BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!
The industry-wide coalition led by BAYADA and DAHCC is pushing
the Delaware legislature for a 21%
increase in the Medicaid home care RN and LPN rates, which would impact our
Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home
care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less
than Medicaid fee-for-service, these new higher rates would have to be paid not
only for “straight Medicaid” hours but also those funded by managed care in
Delaware. These two rates currently remain at their 2006 levels, harming our
ability to recruit and retain the highly-skilled RNs and LPNs that are so
important to the lives and welfare of our clients.
Thank you to our advocates
who turned out and made sure that Delaware’s decision makers know that we are
here to advocate on behalf of our staff and clients, and that home care makes a
difference in the lives of so many Delawareans!
Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.
Meeting Addy and Gloria
Photo: DOV client Addy R. and her HHA Gloria have an unbreakable bond
First, the team stopped by a BAYADA service office in Dover,
NJ to meet the staff and learn about the struggles the office regularly faces
in recruiting and retaining home health aides. Per staff member Helena Anton, challenges
lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that
“you can tell are put on this earth to care for others,” as Helena puts it.
“Smaller home health care companies can usually pay the
caregiver more in wages because we put that money into benefits, training, and
supplies. But the real problem is that Medicaid
reimbursement rates are so low that these caregivers—no matter what company
they work for—aren’t making enough. That’s why we need to advocate to make sure
the state sees how low wages are impacting so many New Jerseyans that are able
to live and their communities and thrive with home care,” added Helena.
After the discussion, the Hearts for Home Care advocates met
home care client Addy and her aide Gloria. The crowd was nearly brought to
tears by Addy’s story regarding the challenges she has been able to overcome
with her “teammate”—which is what she calls Gloria.
“I was extremely touched by Addy’s and Gloria’s
relationship. Not only is it clear how much Gloria has impacted Addy’s daily
life and her sense of self-worth, but the way that Gloria talks about Addy’s
influence on her own life is incredible. You can tell that Gloria was truly put
on this earth to be the nurturing, compassionate caregiver that she is,” said
Tara Montague.
Recently, Addy and Gloria visited Senator Steve Oroho to
share their story and to advocate for better state home care policies. “Helping people is important. And it’s
important that those who help others get the help that they need too,” Addy
told the group. Addy recommitted to continuing to advocate for herself and for others
who are impacted by home health care. “I
want to share my message with legislators. It’s my way of giving back,” she
said.
Lili and Emma Welcome Advocacy into Their Home
Photo: Lili and her nurse Barbara share a high five
Next, Dave, Tara, and Alisa traveled to Morristown to visit home
care client Liliana “Lili” and her mother Emma in their home. As a single mom,
Emma relies on home nursing so that she can keep her full-time job and keep
Lili at home. She told us that her service office team works hard to ensure
that every one of Lili’s shifts are covered. She also shared about times when
that coverage wasn’t so steady: “Our
routine and our comfort level is only as good as today…When Lili’s main nurse
Liz retired, we had a few months where we didn’t know what tomorrow would
bring.”
Lili benefits from New Jersey’s private duty nursing (PDN) program,
which allows for children and adults with skilled care needs to live at home.
Without this program, it is unlikely that Lili would have been able to grow up
with her mom and graduate from school as she did. The PDN program’s rates need
to be raised in order to better attract more nurses to home care, as most can
currently make a higher wage delivering skilled care in a hospital or nursing
home. One of Hearts for Home Care’s
major advocacy goals for 2019 is to educate legislators on the need for a rate
increase and to secure one on behalf of all New Jersey home care clients,
families, and nurses.
Like Addy, Emma is committed to ongoing advocacy to ensure
that nurses see home care as an attractive employment option, so that other
families can receive the home care that they need too. In recent years, Emma has
hosted state elected officials in her home. “Seeing our daily routine and how
important it is for Lili to have a nurse at home is the most impactful way for
an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay
home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili,
but for those in the state who are struggling to get the nursing they need.”
“It’s our clients’ and families’ voices that make the
biggest impact on our state and federal elected officials’ decisions about home
care. Because of advocates like Addy and
Emma, legislators better understand the impact home care has on their
communities,” said advocate Dave Totaro, who also serves as BAYADA’s chief
government affairs officer.
There are plenty of ways to advocate, even from home! To
find out ways that you can make an impact, contact us at advocacy@bayada.com. Together, we can
share our voices to make 2019 the best year for home care yet.
Mike Pollock (left) advocates on behalf of his wife Kathy (center in red) and Kathy’s aide Alma (standing)
Imagine this scene: A woman feels a familiar, nagging stiffness in her lower back as she leans over the edge of the tub to bathe her teenage daughter. Her daughter, who has a significant degenerative muscular disease, sits quietly and securely on a customized bath chair that fits snugly inside the tub. The tub area is decorated with different pieces of adaptive equipment such as a specialty grab bar, floor mat, hand-held shower head, and other items to make the bathing process possible for a person who cannot physically jump in and out of the shower. From start to finish, the entire bathing process takes more than an hour to safely complete.
Whether it is giving a bath, doing a tracheostomy change, starting a gastronomy tube feed, or transporting someone with multiple pieces of medical equipment, families who care for a loved one with a significant medical condition live a vastly different lifestyle than many other families. This lifestyle is not easily understood unless you’ve experienced it.
Legislative advocacy makes a difference
We have learned that when our clients and families talk to our elected officials and the people who make decisions about health care funding and regulations, it makes a difference. We have seen clear evidence across our country that when more people speak up, creating a stronger and louder voice, it is more likely that government-funded insurances—such as Medicaid and Medicare—will adjust funding and regulations to benefit families.
Many of our elected officials have personally not had the experience of bathing an adult child, performing a tracheostomy change, or providing the other types of medical and personal care that are frequently needed in the home. It’s also sometimes forgotten that this care is not just provided once a week or month, but many times a day or week, over years—over a lifetime. The continuous nature of these care needs is what makes home health care services so necessary.
We consult with legislators and insurance officials and ask for increases in our reimbursement rates so we can hire more employees and reduce open shifts for our clients. Our requests often are not approved. However, when the families who actually use the home care services join with us, it makes a big difference.
When clients and families explain why it is important to them not to have open shifts or why their paid caregiver needs a better wage, and share their personal experiences from within the home, it helps these officials understand the need for home care. The people who we petition for increases and better regulations are the same elected officials you vote for, and who are entrusted with serving the best interests of those they represent. This is at the heart of how and why people gathering and joining voices can make a difference. This is the heart of client advocacy.
How can you get involved?
Think about your personal experiences and consider what it’s like to care for a loved one who is in your home or nearby. Let’s unlock those firsthand experiences about the difference a home care nurse, aide, or therapist makes in the care that your loved one needs or receives. Voices of families coming together can create opportunities. Better insurance reimbursement can help us recruit more nurses and aides to fill open shifts. Better wages can mean a more sustainable career for home care workers, which in turn allows more people to remain at home while they receive the care they need.
Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).
South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.
During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.
In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.
Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”
After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”
“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”
Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email advocacy@bayada.com.
