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.
In 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 email@example.com 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 firstname.lastname@example.org 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 the question:
“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 email@example.com for information on what you can do to share your voice and support home health aides.
Hagerstown, MD mother Kimberley Lanham needs skilled nursing care to keep her son at home, but she—and many—are struggling to access the care they need.
We all know nurses as skilled, compassionate professionals that care for us when we are at our most sick and vulnerable. But for many families in Maryland and across the country, their care isn’t limited to a short hospital stay or recovery period. Instead, many individuals and families rely on skilled nursing care every day—and they aren’t getting it.
For individuals like Kimberley Lanham’s son Nathen, who was recently documented on Hagerstown, MD’s WVDM 25, skilled nursing means round-the-clock care. Nathen needs constant skilled medical attention in order to stay at home and grow up living in a safe and familiar environment with family and friends. The problem is, in many states, home care nurses simply aren’t available.
Why? Because home care nurses are often drawn to work in other settings and in surrounding states where they can earn more.
“Maryland’s nurses can make more in hospitals and skilled nursing facilities, and in nearly any surrounding state or Washington, DC. The care they’re providing requires a high level of skill that continues to increase. We need to pay these highly-skilled nurses the wages they deserve. With low Maryland Medicaid rates, we can’t. It’s not only affecting those nurses, but also those individuals that need their care to live with their families and out of residential institutions,” says BAYADA Director of Government Affairs Shannon Gahs.
Licensed Practical Nurse (LPN) Brenda White has been caring for Nathen for nearly 13 years and stays in home care despite knowing that she could make more elsewhere. “You’re doing everything for a patient that can’t do anything at all for themselves, and you wonder, why. Why are they getting paid more? They’re not doing half as what I’m doing,” she said.
In Maryland and in many other states, Medicaid reimbursement rates for home nursing services have fallen well below the cost of living, and home care providers can’t compete with hospitals and other settings that can pay higher wages.
“When nurses are being attracted to hospitals and nursing homes at the rate we are seeing, home care agencies simply can’t keep up. If the state were to allocate sufficient funding, then providers would be better able to recruit and retain the quality skilled nurses that they need, and families like Kimberley and Nathen’s wouldn’t be left in the lurch,” says Dawn Seek, Executive Director of the Maryland-National Capital Homecare Association (MNCHA).
Nathen has Cerebral Palsy and a seizure disorder that often requires emergency medicine, but his mother Kimberley can only access nursing coverage for a small fraction of the time that Nathen is authorized for. “Although I’m with a nursing agency, Optimal Health Care (OHC), they don’t have anyone to do the hours. Everyone is going to other facilities to work,” said Kimberley.
Hearts for Home Care members and other advocates are asking the state to increase the Medicaid reimbursement rate for home nursing care by 21% to put it back on track with wages that other settings and surrounding states can pay. However, currently, the state is only committed to a 3% increase. “It’s just not enough,” says Gahs. “While the state of Maryland has incrementally raised the rate by about 1-2% over the past decade, it has fallen way behind. 3% will not help us recruit and retain the nurses necessary to keep up with the demand, and families may even need to turn to other options. Providers, advocates, and families are looking for more.”
The good news is that, along with the Hagerstown coverage, the Baltimore Sun and Washington Post have also covered the growing crisis in Maryland over the past several months. Across the country, home care recipients, families, and advocates with the same issue are beginning to speak out to catch the ear of reporters and elected officials. While public awareness is increasing, moms like Kimberley are hoping that the governor’s and legislators’ eyes are also on the issue.
“It’s time for the state to do something. My son deserves to live at home, surrounded by his family and the things he loves. I’m already struggling. If I lost my nursing coverage even more, I may have to send him to a [nursing] home,” says Kimberley.
Join mothers like Kimberley and other advocates who are beginning to band their voices together in support of families’ increased access to home nursing care. To learn more about what you can do, contact firstname.lastname@example.org today.
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.
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
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
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 firstname.lastname@example.org. Together, we can share our voices to make 2019 the best year for home care yet.
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.
Recently, home 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.
In California, 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.
While advocacy 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.
Last Tuesday voters took the polls in droves. The high turnout rate—one we haven’t seen for a midterm election in half a century—was driven by strong opinions of President Trump and competitive races that dotted the whole country. But what does the election mean for the future of health care—and home care—in the US?
Key Takeaway 1: Health care is beginning to mean a whole lot more to US citizens
Exit polls around the country proved that Americans care about health care, and they want their legislators to care too. 41 percent of voters participated in exit polling around the country cited health care as the number one issue they considered when they made ballot decisions. This was the number one issue cited, with immigration trailing at 23 percent and the economy at 21.
This prioritization contributed to Democrats’ success in flipping the US House of Representatives from red to blue. Democrats around the country campaigned on a vow to protect the 130 million Americans currently living with pre-existing health conditions and to lower prescription drug costs. While some candidates ran on a more aggressive health care-focused platform than others, the election results make it clear that Americans care about health care and that Republicans’ threats to cut Medicaid and Medicare funding and rollback the Affordable Care Act (ACA, also widely known as Obamacare) was not taken lightly by voters.
This victory puts Democrats in a better position to test the far-reaching health care agenda they have campaigned on for over a year, though any resulting legislation will likely be curtailed by the Republican-held Senate and White House.
Key Takeaway 2: Medicaid Expansion is among Tuesday’s biggest winners
The people have spoken, and they’ve said one thing loud and clear: You cannot block our access to expanded Medicaid. Through ballot measures and new blood in several states’ Governors’ mansions, Obama’s Medicaid expansion will get even bigger in the coming years.
Voters in three deeply red states—Idaho, Nebraska, and Utah—approved ballot measures that specifically called for Medicaid expansion. These measures acted as a tool to gain access to expansion funding despite state lawmakers’ resistance of the optional program. Voters in Montana, which currently has Medicaid expansion, rejected a ballot measure that would have permanently funded the program beyond its June 2019 expiration date. However, Republican state lawmakers have said they want to continue the program with new work requirements.
In addition to ballot measures, the election of new democratic governors bodes well for expansion in three additional states: Kansas, Maine, and Wisconsin, where newly-elected governors have already expressed their support of expansion.
Together, these elections will likely bring the largest growth to Medicaid expansion since the ACA’s early days. At minimum, three states will join the 36 states and Washington, D.C. that have already opted for expanded Medicaid dollars.
To recap the expansion program: In 2014 Medicaid expansion under the ACA became an option for states. 24 states and D.C. opted for it immediately and by mid-2016, an additional seven states signed on. Since then, no additional state has signed on, likely due to resistance from lawmakers in those states. Medicaid expansion allows for more individuals who are above the poverty line to access Medicaid care. The expansion makes financial sense to states who want to provide care for more of their citizens: The federal government covered 100 percent of expansion costs through 2016, currently covers 94 percent of those costs, and will cover 90% in 2020 and beyond. Currently, without the addition of new states, the program allows for 13.6 million people to access Medicaid that could not access it prior to expansion.
Key Takeaway 3: Home care champion US Rep. Frank Pallone is about to be in a health care leadership position
Health care was a hot topic in this election, and Democrats put it at the forefront of their campaigns. Now its up to longtime NJ congressman Frank Pallone to help Democrats keep the promises they made to voters.
In January, Rep. Pallone will take over at the helm of the House Energy and Commerce Committee—a powerful committee that sees approximately 60 percent of bills before they move forward to a floor vote. As leader of this committee, Pallone will be in the center of the much-anticipated, high-volume health care debate, which will in turn form the backdrop of 2020’s presidential race. He will essentially hold the gavel over the Democratic party’s health agenda and will set the tone on named priorities like protecting and strengthening the ACA, and lowering prescription drug costs.
Pallone, who was elected to his 16th term during this election, is well-informed on home care and its impact and importance to millions of Americans across the country. He also understands the potential financial benefits that home care has on state and federal bottom lines. While the partisan tug-of-war over the ACA is likely to take center stage over the coming few years, the home care industry is excited and hopeful about what this leadership position may mean for the future of in-home health care.
Key Takeaway 4: Home care is making a name for itself
Voters in Maine shot down a proposal to create a universal home care program, but there are positive implications: Home care gained awareness on the national front due to the initiative. The proposal, known as “Question One,” would have provided free home-based care to adults over 65 and to individuals in the state living with disabilities. To fund the initiative, Question One proposed a tax on high-income households.
While the measure garnered a great deal of opposition and controversy, home care supporters tout that this first-of-its-kind measure raised awareness of home care and served as a case study for future home care initiatives across the US. “We are incredibly proud of the hundreds of volunteers who placed universal home care on the ballot…We’re also proud to have put Maine’s home care crisis front and center in the public debate,” Yes on One Campaign Manager Ben Chin said in a statement.
Not far from Maine, an unrelated “Question One,” which would have been detrimental to home care providers in the state, failed to woo voters. The proposal would have imposed ratios limiting the number of patients that could be assigned at a time to individual nurses at hospitals and health clinics.
This proposal, which was sponsored by a state nurses union, created a divisive battle. Hospital groups, home care providers, and even fellow nurses, united to push back against the measure—and succeeded. In the end, the union’s view that nurse-patient ratios offer increased patient safety lost out to the opposition, which proved to voters that the “one-size-fits-all” approach increases costs and puts undue pressure on hospitals and other settings, including home care and other post-acute settings that are reimbursed at lower rates. To hear more about how MA’s Question One would have impacted home care, listen to the Home Care Alliance of Massachusetts’ podcast.
Maine and Massachusetts’ battles prove that public awareness and support around home care is growing, and that the nation’s projected home care crisisis more widely-known. The more home care makes it to the public sphere, the better-positioned it is to be acted upon and prioritized at both state and national levels.