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 firstname.lastname@example.org 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!
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.
Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!
Pennsylvania Hearts for Home Care Ambassador Christine Detweiler has always been a diligent advocate, but recently, her efforts have proven that home care employees can truly go beyond the call of duty for clients and staff by serving as their voices in our state capitals.
“Home care is important to so many Pennsylvanians, and many aren’t as readily able to meet with legislators to share their stories,” said Christine. “I see advocacy as an extension of why I do what I do as a home care employee: We need to make sure we get out there to be a voice for those who don’t have one!”
Christine has been progressively adding more interactions to her advocacy portfolio—Over the past year-and-a-half she focused on meeting legislators in their district offices, and in the past few months she has hosted multiple home visits. Home visits are the most impactful way to demonstrate the importance of home care to legislators because it gives them a chance to see firsthand how clients receive services. To say Christine’s home visit resonated with Pennsylvania state Representative Marguerite Quinn is an understatement.
A few months ago, Christine led the representative on a home visit with five-year old client Gideon M. who suffers from Spinal Muscular Atrophy (SMA). His mother shared their heartwarming story and opened up about their family’s challenges and Gideon’s ever-growing needs. Her story impacted the representative so deeply that shortly after the visit, Rep. Quinn emailed Christine to further assess the family’s needs and determine how she could help them obtain a transportation cart that would make Gideon’s care easier. The outreach didn’t stop there.
Rep. Quinn recently reported to Christine that she has arranged for a builder to come into the family’s home to build custom doors to create a private area for Gideon downstairs. She also reported that she contacted a rotary to find out if the family can be provided with a generator so that they do not need to constantly worry about their home’s power going out. It is truly remarkable how Christine’s efforts have impacted her client and his care.
In addition to her efforts for Gideon’s family, Rep. Quinn introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. After introducing this legislation, Rep. Quinn encouraged the state Newborn Screening Advisory Board to support the measure. As a result of her continued efforts, this past month Secretary of Health Dr. Rachel Levine signed the recommendation.
The Hearts for Home Care Team can’t be prouder of the impact that Christine has made! Her passion and tenacity has reached the hearts of many legislators, and she is truly making a name for herself in Harrisburg as a tireless advocate!
Whether you worry about your aging parents’ ability to remember to take their medication on time or you have a medically-complex child that requires 24-7 skilled nursing care, families that rely on home care across the country are feeling the squeeze: There just aren’t enough quality in-home caregivers, and it is quickly becoming a crisis. While more of the general public is beginning to understand the negative impact this is having on our communities, there is much more to be done to mitigate the impending consequences. Together, we can advocate to combat this looming access-to-care crisis.
We’ve read the articles and we know the facts. Home care is the most cost-effective and patient-preferred healthcare setting for individuals and families who want to remain at home. This is true for older Americans who wish to age in place to parents who believe their child should live at home and not be raised in costly institutional settings. Moreover, demand for in-home caregivers will be continue to increase as baby boomers age and better treatments for chronic illnesses and disabilities continue to become more widely available.
If home health care is in high demand, why are we still facing a shortage of available workers? Home care providers struggle to recruit and retain enough quality caregivers to keep up with the growing demand. Because many insurance companies still do not cover in-home healthcare services, many home care providers rely on government reimbursement rates to cover provided services. That is: When a patient is prescribed and authorized for in-home care, the state reimburses the home care provider for delivering that service. The provider relies on that reimbursement rate to not only pay the direct care worker’s wages, benefits, supplies, and training, but also to cover wages and costs for the workers needed to coordinate and supervise in-home staff.
While rates vary widely depending on the service and the state the care is delivered in, there is a dominant trend that contributes to providers’ inability to keep up with demand: State governments’ reimbursement rates are too low to attract and retain the proper, high-quality workforce necessary to deliver this care. And there are several competitors at play: Hospitals and other institutional settings like nursing homes are able to pay workers more because one caregiver can deliver multiple services to multiple people during one shift, so institutions are able to rely on multiple reimbursements to cover employee wages and costs. Additionally, the home care industry faces competition from non-healthcare industries like fast food companies and retailers, which can often pay workers at competitive rates and offer more consistent schedules and other benefits.
While home health care offers one-on-one care to vulnerable individuals at a lower cost, these reimbursement rates have stagnated and fallen past the cost-of-living across many states. Some states, have not addressed reimbursement rates for decades, putting home care providers at even more of a disadvantage when competing for labor. For example, California has not increased its reimbursement rate for Medicaid home nursing services for nearly two decades. Even the most compassionate home care workers who enjoy the personalized nature of home care are leaving the industry for better-paying jobs in neighboring states and in other settings and industries.
Who can resolve this issue? By and large, state governments are responsible for making decisions that affect home care, including reviewing reimbursement rates and adjusting them so that home health care providers can attract the workforce necessary to keep vulnerable state populations at home. While the rates vary in each state, one thing is consistent across state lines: legislators, who are responsible for making these decisions, are under great pressure to keep state budgets in line while making the necessary expenditures to all of the departments, industries, and populations that need the government’s financial support. All too often, other industries’ voices are heard louder, and home health care continues to fall by the wayside.
Is there any good news? Yes: People are beginning to see the problem. Public awareness of the importance of home care and of the impending access-to-care crisis is becoming more widespread. People care about the issue now more than ever before, and people across the country are beginning to realize that, even if it doesn’t affect them now, home care will impact their lives in the future.
Reports, studies, and articles have made information about the home care industry and the widening labor gap more available. Mercer Health Provider Advisory recently created an interactive map that visually depicts the deficit of home health aides and other healthcare workers in specific states and across the US through 2024. Articles have come out in the Washington Post, Boston Globe, Baltimore Sun, and in local news outlets in South Carolina and Rhode Island, among other states.
And the other good news is evident to many: Home care is simply the right choice. Many legislators are aware of home care’s cost-saving potential, especially as home care keeps people out of costlier institutional settings and prevents ER stays and hospital admissions. And while they may understand the advantages that home care offers families in general, not all legislators realize the impact home care has on the families that they directly represent as public officials.
Public awareness isn’t enough. Action is necessary. Studies, reports, articles, and direct lobbying efforts from home care providers and state and federal associations and partnerships have raised the public’s and legislators’ awareness of home care as a service. However, lawmakers’ awareness of home care issues have not yet spurred them into taking action to address stagnating reimbursement rates and providers’ inability to compete for a fair share of the labor market. We must leverage our collective voices by truly showing legislators what home care is, how it impacts us, and what happens if families can’t access care. Legislators must change laws and policies to reprioritize home health care for their constituents.
What can you do? Join the movement. As individuals, we are responsible for telling our elected officials what is important to us and what those we elect to office should prioritize and champion. Advocating for home care is easy: Call your state and federal representatives and senators to request a meeting to discuss home care, or even simply send a letter, an email, or even a Facebook message or Tweet to let them know about what home care means to you. The Hearts for Home Care platform was specifically created to help members of the home care community learn about opportunities to get involved in home care advocacy. There are plenty of ways big and small to get involved, the most important thing is that we share our voices with one unified message: Home care is important to me, and it should be important to you too.
Every day, BAYADA employees, clients, and families use social media to connect with one another, keep in touch with distant friends and relatives, and learn about news and events near and far. But social media has evolved far past the traditional definition of “social.” In today’s world, social media gives the home care community the opportunity to spread public awareness about home care’s impact and the opportunity to more conveniently advocate for better home care laws and policies.
Advocacy simply means communicating to elected officials what home care means to you and how it impacts your everyday life. Because our state and federal lawmakers make decisions that affect home care providers’ ability to recruit and retain quality caregivers to serve our clients and their families, it is important that they are able to connect home care to their constituents’ names and faces. Social media outlets, particularly Facebook and Twitter, allow for members of the home care community to advocate from the convenience of their home or office.
Sharing a video of a family expressing the value that their in-home nurse or aide brings to them and their loved ones, for example, enables other social media users to understand how home care impacts them, their neighbors, and thousands of people across the country. Our Hearts for Home Care platform is designed to share videos, quotes, photos, news, and advocacy opportunities with elected officials and the community at-large.
In addition to this platform, it’s important that members of the home care community—including staff, clients, and family members—are aware of the power they hold at their own fingertips. Getting involved in advocacy through social media is easy, and the more we share our voices the better we can be heard. In addition to following our Facebook and Twitter, you can tell your elected officials what home care means to you in three easy steps:
Like and follow them on social media (the links are right on the page!)
Connect with them regularly: Share Hearts for Home Care’s posts with your legislators, post on their pages about what home care means to you, or message them to ask them about meeting them in-person to talk about the value of home care. You’ll find that their pages will also give you information about news and events like Senior Expos and Town Halls that may be valuable for you, your staff, or your clients.
Social media not only brings people who value home health care together, but it shows those who have not yet needed home health care its value and necessity. It gives our industry a face and a voice and allow our representatives and senators to see that it affects real people in their communities, and it shows our elected officials that our friends and neighbors with special medical needs should be able to receive the care they need in the place the feel the safest and most comfortable–at home. To learn more about how you can be a voice for home care, join Hearts for Home Care today.