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
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 email@example.com to
learn about how you can share your story and make an impact today.
Recently, a Delaware pediatric licensed practical nurse
(LPN), Charlene Chappell, signed up for Hearts for Home Care and wanted to get
involved. And did she come out in full force!
After sharing powerful and heartfelt testimony in Dover,
DE’s Legislative Hall about the impact
she makes on families and the challenges low Medicaid rates bring to nurses who
want to provide one-on-one care to families at home, Charlene listened to a
radio show where host Joel Olsteen spoke about “an itch you just can’t
That got Charlene thinking about more advocacy. Charlene said, “I feel that the majority of men and women that serve as elected officials have no clue what’s required of a family when they have a child that has special needs and is differently abled! They don’t understand that nurses need to be attracted to home care so that families can rely on this care to keep their medically-complex children at home.”
That inspired her to write the below story and send it to all Delaware legislators. Read Charlene’s powerful story below!
I have an itch! Mo matter how hard I try to let someone know, I can’t. I’m 8 years old and I can’t tell Mommy where I itch! I can’t reach my itch! Its 2:30 in the morning and Mommy has fallen asleep in the chair next to my bed because she had to work today and then take my sister to her dance lesson. When she finally arrived home she threw some dirty laundry in the washer, and cooked dinner. After dinner she put the wash in the dryer, and then she loaded the dishwasher. She came in my room to check on me and feed me. Off she went to make sure my sister had done her homework and was in the shower. Oh no, an alarm is going off! Here comes Mommy. I wish I could tell her how much I love her for all she does and about my itch. She looks so tired. It’s almost 8:00 pm. The phone is ringing. Hurry Mommy before they hang up!
I can hear Mommy on the phone. “What! Oh no, please tell me it’s not true. I’m so tired tonight. I don’t know if I can stay up all night with him but I must. I have to make sure he’s ok on his ventilator and his medications are given at the right time, so he doesn’t have a seizure, and that the tube feeding is running properly. He has to be repositioned every two hours so his skin doesn’t break down. I have to check his diaper too. Well… thanks for the phone call.”
Oh no. Mommy just found out my favorite night nurse called out tonight, and the rest of forever. The agency is going to try and find a replacement as soon as possible, but that may take some time. Nurses aren’t as anxious to get into home health care nursing because they can make more money at a hospital. Mommy is going to miss work because she will have to stay up with me as Daddy’s gone from home with his job right now. Mommy may lose her job. I’m so sad my nurse left. She really knew me and she knew when I had an itch. She would gently scratch me all over till she found it, like Mommy does. She understands my cues and my facial expressions as I can’t talk, or walk, or move because of my illness.
I heard Mommy talking to the lady at the agency about the nursing shortage in home health care. She told Mommy that the money provided for reimbursement by Medicaid, not Medicare, has not increased in 13 years! The last time there was an increase in Medicaid was in 2006! I wasn’t even born then! She also told Mommy that the companies are running out of their own funds to supply the raises the nurses deserve. God bless the nurses that do work in home health care, for a lesser wage then they deserve, and take care of not only me but my mommy and Daddy too. Without them my Mommy and Daddy would not get the proper rest, would have to quit work to care for me. It would not be a good thing for my family. We would all suffer. I don’t want to go anywhere but here in my room. What if we can’t find a new night nurse? Where will I go? I overheard the doctors and nurses at the hospital talking last time I was admitted for a bad seizure and they said that all children do better in the home setting for getting well once they can leave the hospital. They are less likely to get sick again from a disease they acquired while in the hospital, and all of us are more comfortable in our own bed!
I hope my story has helped you to understand why we need to increase the Medicaid budget. Not Medicare, but Medicaid. Mommy told me that some people get confused so that’s why I will say it one more time. Please increase the Medicaid funding for home health care nurses.
Thank you for reading this. Mommy thanks you as well as all the other children and their parents that require specialized home health care nursing. And yes, Mommy found my itch!
Thank you, Charlene, for sharing your creative and passionate story with Delaware’s legislators. We must all share our voice to make an impact, and your advocacy highlights your deep commitment to your clients’ care.
Hearts for Home Care is seeking to advocate for higher reimbursement rates for skilled nursing services in Delaware so that nurses can be better attracted to home care, and so families that need this care to stay together at home can more easily and reliably access it. For information on how you can get involved, contact us today!
We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.
Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.
To All I Work with in NC DHHS and Medicaid,
Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.
These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.
The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.
Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.
To my old and new friends in DHHS and Medicaid, I appreciate you always having my back. Also, my sincere gratitude to Saunja Wilson for catching a “Near-Miss” that would have been just as deadly to me as a medication overdose.
All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime! My best wishes in the coming year and Happy Holidays!
On March 28, our annual North Carolina Hearts for Home Care Ambassador Symposium took place, where we provided tools and resources to our volunteer Ambassadors. The training focused on a variety of topics, including leading a legislative meeting and building relationships with lawmakers.
addition to special guests former Representative Bill Brawley, Senior Healthcare Campaign Director of MomsRising Felicia Burnett, Association for Home
& Hospice Care’s VP of Government Affairs Tracy Colvard, and Staff Attorney with Charlotte Center for Legal Advocacy
Louise Pocock, the shining star of the Symposium was client Dimpal, who inspired
all of our Ambassadors with her story of her journey into advocacy.
Beyond detailing the specific challenges she and her family face as a result of low state Medicaid reimbursement rates, Dimpal also described the ways in which home care and her nurses have changed her life and granted her independence:
“Without my nurses, I wouldn’t have been able to go to college and to live a full life. Without them, I’d likely be stuck in a hospital or a nursing home,” said Dimpal.
It was this gratitude for her nurses that propelled Dimpal to share her story and to advocate for others who rely on the state’s Private Duty Nursing (PDN) program to survive.
To hear more about Dimpal and the importance of advocacy, you can watch her full speech here. You can also read about her nursing care in the Gaston Gazette after a reporter came to her house to learn more about how her nurses impact her everyday life.
Special thanks to our Hearts for Home Care Ambassadors
for volunteering their time and talents advocating for our staff and clients!
Assemblywoman Murphy was alerted to the issue after Hearts for Home Care manager and advocate Tara Montague told her about the issue, and how it has impacted her daughter, Mary, and many of New Jersey’s medically fragile children. Mary and Tara have utilized the fund, and have been important advocates in ensuring the fund is both adequately funded and accessible for the many New Jersey residents that need it.
Currently, families can apply to the Catastrophic Fund to purchase a modified van so that they can safely transport their medically fragile child. However, current regulations require that families pay for the van upfront and wait to be reimbursed by the Fund. This stipulation presents a sincere barrier to transportation for families that cannot afford to front tens of thousands of dollars while they wait to be reimbursed.
Mary’s Law addresses this issue by requiring the Catastrophic Fund to provide direct payments for the purchases of specialized, modified motor vehicles. In addition, this legislation will increase the annual surcharge for New Jersey employers from $1.50 to $3.00 per employee to insure the Catastrophic Fund is adequately funded to meet the its purpose and demands.
“Medically fragile children like Mary deserve to travel safely and freely. This legislation ensures that children and their families receive the help they need regardless of their financial situations. Ever since Mary was born, I’ve been a staunch advocate for her needs and for better laws and policies, but I never thought advocacy could hit so close to home–Mary and our family are ecstatic that we can bring about change for all New Jersey’s children and families that need it,” said Tara.
Thank you to Tara and Mary for continuing to be effective advocates on access to transportation. Hearts for Home Care will continue to provide updates as the legislation progresses through New Jersey committees and chambers. If you have questions about this legislation or how to get more involved in advocacy on behalf of yourself, a loved one, or your staff and clients, please contact firstname.lastname@example.org today.
On April 9, more than 300 home care advocates—clients,
families, caregivers, and employees—joined the Pennsylvania Homecare Association
(PHA) at the state capitol in Harrisburg. Advocates met with hundreds of the
state’s representatives and senators to deliver an important message: Home care
is important to me, and it should be important to you too.
Check out pictures from the legislative reception, the kickoff rally, legislative day meetings, and the PHA press conference! Care about home care and want to share your voice? Check out heartsforhomecare.com or email email@example.com to find out how you can get involved in advocacy today!
As home care clients, employees, caregivers, and family members,
we know one thing for a fact: Home health aides do incredible, compassionate
work that enable hundreds of thousands of residents across the country to stay
at home and out of costlier, more infectious settings like nursing homes and hospitals.
And we certainly know another fact: The
work that aides do is invaluable, and it’s time that they begin to receive a
fair wage for the hard work they do.
Low aide wages have recently made national headlines and the message is clear: We will need more and more home health aides as America’s population continues to age. But home health care providers are having trouble recruiting and retaining the quality, reliable workforce needed to keep up with the growing demand.
Recently, Hearts for Home Care advocate and BAYADA Home Health
Care’s chief government affairs officer, Dave Totaro, submitted his opinion
on the matter to STAT News, a media company focused on finding and telling
compelling stories about health, medicine, and scientific discovery. He posed
“To say that home health aides’ work is demanding is an understatement. They make it possible for 14 million Americans to stay in their homes and out of expensive and impersonal institutional settings like hospitals and nursing homes. Performing this necessary and in-demand work takes a physical and emotional toll, yet these individuals do it with compassion day in and day out.
So why do we treat home health aides as low-wage, low-value workers?”
The problem lies primarily in states’ low Medicaid funding for
home care programs. Though states typically pay an hourly rate for providers
who deliver home health aide services, these rates have largely been low for
many years, or raised periodically, but at a rate too low to keep up with real
costs of living and providing services. Because these rates must cover wages,
training, benefits, new hire costs such as background checks and TB shots, and
supplies, it is nearly impossible for
home health care companies to take such a low rate and provide aides with a wage
high enough to compete with industries like fast food and retail.
News coverage of the issue has been effective in bringing greater public
awareness to the issue, especially as nearly all individuals will be touched by
home care at least once in their lives, whether it be for themselves, a parent,
friend, or other loved one. Now is the time to take awareness and turn it into
action. Call your state legislator and let them know what home care means to
you. Contact firstname.lastname@example.org for
information on what you can do to share your voice and support home health
It’s undisputable: Home health aides provide a lifeline to millions
of Americans that need assistance living where they want to be—at home. But low
wages often disincentivize home care workers from staying in the field. The problem lies in Medicaid reimbursement
rates: Home health aides rely largely on state-determined Medicaid
reimbursement rates for their wages, and those rates have stagnated well
below the cost of living—and many states have not addressed this in years.
Luckily, many states have proposed increasing
the mandatory minimum wage. And while many businesses often oppose such
measures—many home care industry leaders
have come out in support of it because they recognize the importance of
aides in helping keep people at home and earning a fair wage for doing so. But
we must ensure that minimum wage increases are done with the recognition that many
home care programs rely on state funding to pay their workers. And if that
funding isn’t increased in tandem with mandatory minimum wage increases, the state could unintentionally be putting
vulnerable residents at risk.
Simply put, if Medicaid reimbursement rates for home care services are not increased at all, or at a rate too low to cover new minimum wage standards, then many home care providers will need to consider whether they can afford to keep their doors open. If providers do decide that they cannot remain sustainable and do decide to forgo providing Medicaid-based home care services, then the real loser is the millions of Americans that rely on that provider to live independently at home. Down the line, this could result in more people who can live at home with help from a home health aide into being forced into nursing homes.
“People want to live at home. And it’s the most cost-effective option for states. Home health aides are the backbone of our industry and we absolutely support wage increases for our workforce, but states need to be thoughtful in their approach to protect the many seniors and individuals with disabilities that rely on home and community-based services. We are working with state legislatures to make sure that they understand the relationship between rates and wages, and the potential risk to vulnerable residents who need home care,” says BAYADA Chief Government Affairs Officer Dave Totaro.
So far this year, 18 states have started the year with higher
minimum wages than the year before. If you live in a state where the minimum
wage is set to increase, then you have a unique opportunity to advocate and tell
your legislators about the importance of home care and of paying home health
aides a living wage. Contact email@example.com to find out ways you
can play a role in ensuring that home care is accessible to the many that want
to stay at home, and that home care workers continue to be attracted to a field
that helps them do just that.
We know the struggles families can face with home care: The call-outs and missed shifts, the lack of sleep, the caregivers who are like family but can’t afford to make their own ends meet, and the frustration that comes when you or your loved one can’t access the care that is deemed medically necessary. We also know the value and impact that sharing our voices has.
care advocates have made the news for their efforts across the country. Specifically,
on December 28, the Washington
Post covered the impact that providers and parents are having in
driving public awareness of the struggles that Marylanders and Virginians are
having in accessing the skilled nursing home care their families need.
Washington Post reporter Tara Bahrampour points to low reimbursement rates in both states as the major issue contributing to families’ struggles—
“The reason lies in a stark state-by-state discrepancy in the pay in-home nurses receive through Medicaid. Maryland and Virginia have set reimbursement rates significantly lower than surrounding jurisdictions…As a result, licensed practical nurses [LPNs] are finding more lucrative positions out of state or at hospitals or other care institutions that pay more, leaving many homebound Medicaid patients without services.”
Hearts for Home Care has been leading the charge in Maryland, where a coalition of home care clients, parents, providers, and other advocates are pushing for a 25 percent increase for skilled home nursing services. Advocates say that this increase—half of which would have to come from state coffers—would serve to alleviate families’ inability to access care an average of 17 percent of the time, as reported by the state’s Department of Health. Hearts for Home Care advocate and BAYADA Home Health Care director Shannon Gahs says:
“Maryland is failing its citizens who have significant medical disabilities. Failing to provide care 17 percent of the time not only creates a dangerous situation for the person who relies on that care—it harms his or her family. Parents are calling out of work and losing the sleep they need to stay healthy to support their family. They’re doing everything they can to keep their family members safe, but this is not how it is supposed to be. We have to do better.”
In comparison, neighboring Delaware found that shifts are missed 7 percent of the time. There, the state reimburses providers at a rate approximately 30 percent higher for LPN home care services.
Governor Jerry Brown recently proposed a whopping
50 percent wage increase for home care nurses—a move that
advocates have pushed for over the past several years. As with families across
the country, Californians who require skilled nursing home care have been
struggling to get nursing care for their loved ones. Advocates report that under Medi-Cal—the state’s health care
system for low income and disabled Californians—rates have not been addressed
in 18 years.
While both the
Maryland and California proposals are still pending, home care advocates have been successful in driving public and
legislative awareness of low reimbursement rates and the impact on
families’ access across the country in recent years. Most recently, the home
care industry has seen reimbursement rate increases in Rhode Island,
Massachusetts, South Carolina, and New Jersey among other states. It starts
with educating legislators through advocacy via any number of channels:
Traditional and social media, letters, phone calls, meetings, and more.
can seem like an intimidating activity to many who do not yet engage in it,
it’s important that we share our advocacy wins with the home care and health
care community at-large. As illustrated in recent news, when we band together
to leverage our voices in unison, big changes can happen. It’s important to
take that first step and make your message heard on behalf of the millions of
Americans that rely on home care.
BAYADA Home Health Care client and Hearts for Home Care advocate Dimpal Patel shares her view on home health care in an opinion submitted to her local newspaper.
I might sound like your typical local 23-year-old: I recently graduated from UNC Charlotte with a bachelor’s degree in marketing. I absolutely loved living independently on campus, and I love to play games and watch movies. But I am very different from most 23-year-olds you know because I rely on a trach and ventilator in order to survive, and it’s because of my home care nurses that I am able to grow and thrive independently.
My two BAYADA Home Health Care nurses—Chastity and Toni—have been with me for nine and six years each. They are like family to me, and they really are lifesavers. Without them, my parents would not be able to work and keep me at home, and I certainly would not have been able to experience college life. Chastity and Toni not only provide me with the skilled services that I need to survive, but they really are like best friends to me. I can’t imagine what my life would be without them—not only would it be without my two friends, but I’d likely be stuck in the hospital, a nursing home, or rely on my mom or dad to quit their job to take care of me.
My worst fear is that lawmakers cut Medicaid funding like they tried to do in Washington last year. If this happened, not only would I likely lose my nurses, but I’d be at risk of having to move into a nursing home. As someone who has experienced living independently and how it has allowed me to earn a degree and contribute to society, I ask that our state and federal legislators be mindful of what funding and service cuts can mean—not only to the state’s financially needy or to the elderly—but to 23-year-olds like me who want to continue living a full life.