Delaware’s capital—Dover—has its fair share of advocates: Nearly every day, residents and special interest groups from around the state gather in Legislative Hall to share their messages with decision makers. Recently, LaToya Martin—mother of 7-year-old Massiah Jones—made her challenges with the state’s availability of in-home nursing clear to not only local lawmakers, but with many people across the nation.
“For LaToya, advocacy is part of her everyday life.”
For LaToya, advocacy is part of her everyday life. Massiah is medically-fragile and suffers from a rare seizure disorder as a result of complications from Tuberous Sclerosis Complex (TSC). LaToya regularly serves as Massiah’s advocate in calls and appointments with doctors offices, insurance, and with the state of Delaware. Due to her dedication to her son’s health and his ability to live his best possible life, Massiah has been able to grow up and thrive safely at home with her, and with the help of in-home private duty nursing (PDN).
Challenges accessing nursing care
Recently, Massiah unfairly lost many of his authorized PDN hours due to the COVID virus’s effect on his ability to go to school. Always going any length to be Massiah’s voice—and the voice of many other medically-complex families around Delaware and the US—LaToya shared her powerful and unique story, citing her challenges with accessing nursing care and the inability of home health care providers to recruit and retain enough nurses due to the state’s low Medicaid reimbursement rates for Delaware’s PDN program. Her topmost priority is to show Dover’s decisionmakers why there needs to be a change in order to ensure the health and safety of Delaware’s most vulnerable children, and to empower other mothers and caregivers to unify their voices to do the same.
Hundreds of thousands of mothers, fathers, guardians, and other caregivers have a story to tell, but understandably, find it difficult to find the time and opportunity to share their voices. At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at email@example.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.
Mom Kateri Morton (right) was featured on ABC-47 with son Joey (left) to advocate for increased funding for DE’s PDN program
Hearts for Home Care super-advocate and super-mom Kateri Morton was recently featured on ABC-47 alongside her 8-year-old son Joey and his long-time nurse Diane to advocate for better state Medicaid reimbursement rates. To date, Delaware has not raised reimbursement rates for the state’s private duty nursing (PDN) program in 16 years. As funding for this important program falls behind rising costs of living and providing healthcare services, it’s families like Kateri’s that ultimately suffer.
“Most of our nurses have either left or stopped working in that area because of their own health factors. Or they had to go to different jobs for employment,” says Kateri. Home care agencies rely on the state’s reimbursement rate to provide nurses’ wages, supplies, training, and benefits. The 16-year stagnation has driven nurses to seek employment in hospitals and other facilities that can afford to pay nurses more in wages. As agencies struggle to recruit and retain enough caregivers, families experience more unfilled nursing shifts, sleepless nights, and struggles maintaining employment.
The COVID-19 pandemic has only exacerbated the issue, as staffing issues have limited nurses’ ability to care for high-risk clients and as precious personal protective equipment (PPE) has raised providers’ everyday costs. Nurse Diane says, “We’re struggling. We can’t retain our nurses, and with COVID going on, more and more families are being touched by home care nursing.”
The key to getting this issue on the top of legislators’ minds is to increase the number of affected family members who speak out and advocate on behalf of themselves and their children. Kateri’s network of DE moms and other guardians have shared their unique stories and struggles with one another, and with Delaware’s decision-makers. Recently, Kateri secured meetings with Delaware’s Medical Advisory Committee and the Department of Health and Social Services. “Advocating for Joey has empowered me. Without nursing, I can’t provide financially, physically, and emotionally to my fullest,” says Kateri. “As mothers of medically fragile children… when there is an opportunity to show an elected official how important this care is, that story paints a picture that a million facts and statistics cannot.”
Kateri recently created a Facebook group for DE families interested in advocacy. Check out her group and Hearts for Home Care to join others in advocacy opportunities today!
Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors.
Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country.
A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own. For these reasons and many more, Shelby was the clear choice as the 2019 honoree.
“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”
Oftentimes, when we hear the word “advocacy” we think about
attending a BAYADA-sponsored lobby day in a state capitol or visiting a
legislator’s local office to ask him or her to support or oppose a piece of
legislation. While both those options are in fact forms of advocacy, they’re
not the only ones.
North Carolina client Dimpal Patel recently joined Hearts for Home
Care, a program that BAYADA’s Government Affairs Office began to get
clients, families, staff members, and the community at-large more engaged in legislative
advocacy. She expressed that she wanted to get involved, but as an individual
with a trach, vent, and wheelchair, she would need a lot of assistance
traveling to advocate in person.
The Hearts for Home Care team immediately encouraged her to
reach out to her local paper by submitting a short opinion piece about her
thoughts on home care. She shared an insightful
take on how her nurses enabled her to live on campus and graduate
from UNC Charlotte, as well as how important Medicaid is for her and so many
others that rely on home care.
The Gaston Gazette received her piece, but instead of
publishing it, they sent a reporter to Dimpal’s home to get a better look at
how home care impacts her life first-hand. The reporter spoke with Dimpal and
her nurse, Amy, about the importance of legislators’ mindfulness of continued
Medicaid funding—and her
story made the paper’s front page!
“I’ve always wanted to get more involved in advocacy because
I think it’s important that our state and federal decision makers hear our
voice and understand how important home care is in our communities… but I was
always worried because I can’t get to the state capitol or to legislative
hearings as easily as others can. I’m grateful that Hearts for Home Care has
given me the tools to help me begin my advocacy journey from home,” Dimpal told
Home care by its very nature often helps those with limited
mobility to live a full life and remain at home. That’s why the Hearts for Home
Care team developed a robust menu of advocacy activities—so that anyone who
wants to get involved in advocacy can! Reaching out to legislators via
traditional media or social media, calling into a town hall, sending a
newspaper clipping or an email are just a few of the many ways individuals can
advocate from their own home.
In today’s world elected officials and regular individuals
alike are bombarded with messages, from advertisements on the bus to a long
social media newsfeed, all the way to robotic phone calls and junk mail. It’s
important that we take a step back to cut through the noise to deliver our
advocacy message to state and federal decision makers: Home care is important to me, and it should be important to you too.
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.
Legislative successes, like the NC Medicaid rate increase for nursing in 2015 and 2016 and the home health aide increase this past year, don’t magically happen. Legislative successes start with an identified need — low Medicaid rates made it impossible to pay people what they are worth — and end with legislators supporting jobs in the community and keeping families together by investing in home health care. Every step along the way our Hearts for Home Care Advocates carried our unified message to decision-makers. Our cumulative actions over the years, including home and district visits, legislative round tables with lawmakers, responding to calls to action, attending lobby days, etc., made all the difference. Individually and collectively our shared voices got results. Join us to be a Heart for Home Care Advocate.