Hearts for Home Care has had a busy year, working to secure public and legislative awareness to home care challenges across the industry. Over the first half of 2021, the duo of Alisa Fox and Marissa Fogal has worked in conjunction with BAYADA’s Government Affairs office to urge legislators to recognize and address home care industry challenges through user-generated traditional media and social media coverage. Over the past three months, the Public Affairs team launched three state-wide media campaigns in Pennsylvania, New Jersey, and North Carolina focusing on the lack of state funding for both Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs, securing media coverage in major outlets like The Inquirer, NJ.com, and Spectrum News—all of which have garnered a total of 43,452,500 views.
Through their dedicated Hearts for Home Care social media efforts—which were formally added in September of last year—the Public Affairs team has been able to increase their audience reach to an additional 114,400 people over the three state-wide media campaigns, and these efforts only continue to grow.
BAYADA’s Public Affairs team, in conjunction with the Government Affairs office, continues to advocate for medically fragile individuals and bring legislative action to the issues these populations face. To stay informed on important home care industry news and media updates, please follow Hearts for Home Care Advocacy on Facebook and Twitter!
May is Better Speech and Hearing month and we would like to celebrate how our Hearts for Home Care advocates, Mark Steidl and Ari Anderson have never let their diagnoses stand in the way of making their voices heard. They are an inspiration to so many of their peers and fellow advocates ─ stopping at nothing to help and improve the lives of medically complex individuals who rely on home care to keep them cared for and safe.
Mark Steidl, from Pittsburgh, PA, doesn’t let communication challenges stop him from sharing his story with legislators. Diagnosed with Cerebral Palsy, he uses a Dynavox communication device to educate lawmakers on the importance of home care and the impact his home health aides and nurses have had on him. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.
Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days — days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.
In a conversation with Mark about his advocacy work, he said, “Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”
Ari Anderson, from Charlotte NC, truly understands the importance his home care nurses have had on his life, and because of this, dedicates his life to advocating for them and the other individuals who benefit from their care: “My nurses have provided me with life-sustaining care,” he says. “Most die from [Spinal muscular atrophy] SMA type 1 by age 2.” Ari was diagnosed with SMA Type I at 6 months of age. 38 years later, thanks to his dedicated nurses, new technologies, and medical therapies he is living his life healthy and independently at home.
With the help of his communication device, Ari has become a passionate advocate, inspiring all who meet him. His team of highly skilled nurses has also enabled him to graduate from high school, receive his bachelor’s degree, and earn a master’s certificate in technical writing. He now authors a column for SMA News Today and dedicates much of his time to advocating for home care and educating the public on its value. Most recently, using his communication device and eye-gazing technology, Ari brilliantly crafted a video he uses to educate North Carolina legislators about the impact of home nursing.
For Ari, skilled home care nursing has long-been a lifeline that has allowed him to grow up and thrive despite his prognosis. Most importantly, it has enabled him to be where he wants to be: at home.
Both Mark and Ari rely on skilled in-home caregivers to remain safe and cared for surrounded by their families at home. Like Mark says, the American healthcare system has changed and high-quality care at home is becoming the new norm as families and their loved ones choose home care over long-term care and nursing facilities. Lower costs of care and preventable hospitalizations are just two of the many reasons that home nursing care is optimal for the state and its residents.
However, skilled home nursing programs are state funded by Medicaid and the reimbursement rates given to providers are not enough to keep up with the competitive wages hospitals and long-term care facilities are able to offer. Without competitive wages, providers are struggling to attract qualified nurses to the industry, thus leaving medically complex individuals like Mark and Ari at risk without care. Our advocates are urging state legislators to invest in home care and raise reimbursement rates ─ as the future of our healthcare system is in the home.
Mark and Ari are super-advocates who are inspiring those around them to make their voices heard. For ways you can advocate for yourself, your loved ones, and your community at-large, please email firstname.lastname@example.org.
In honor of Autism Awareness Month, Hearts for Home Care is celebrating those living with Autism Spectrum Disorder and raising awareness on the issues they face every day.
Grant Williams is an active and intellectually curious 26-year-old living with autism, cerebral palsy, and was born with a Traumatic Brain Injury (TBI). However, none of those diagnoses slow him down! “Grant isn’t a geriatric—he is energetic and needs to be able to go outside and engage in his environment daily. But he can’t do it alone—his cognitive and communication skills, plus his balance and coordination, prevent him from being fully independent,” Grant’s father, Bob Williams says. That’s where Grant’s home health aides come to his assistance.
Grant is part of the New Jersey Personal Care Assistant (PCA) program – a state-funded program that allows qualifying adults and seniors who may otherwise be relegated to full-time facility care (i.e. nursing home), to remain in their communities as independently as possible with assistance from home health aides (HHAs). This program assists individuals living with physical and developmental disabilities with daily activities like dressing, bathing, walking, and tasks that would otherwise be too difficult or too dangerous for the individual to perform alone. The PCA program has been a lifeline for the William’s family for the past five years and since COVID-19 hit and shut down Grant’s full-day program, care at home became even more vital to their family.
Bob also has his own permanent disability, and Grant’s HHA care was especially critical after Bob’s invasive back surgery all but incapacitated him in December. “Grant is a big guy — he’s about 5’11 and 175 pounds, so I can’t manage him with my own health issues, plus his,” says Bob. However, finding a home health aide for those who are qualified for the PCA program and authorized by their doctors for home health aide care still isn’t easy. Grant has had many aides leave for other industries and settings. Bob has seen a revolving door of aides and understands why it is so difficult for them to stay in the industry, even if they love what they do: “Aides who love their work tend to leave the industry to receive a higher education degree, or to find work in other settings like hospitals or nursing homes. At the end of the day, they can’t make fair wages in the home care field,” says Bob.
Bob has been an avid advocate for Grant throughout his life, ensuring he has the best care and opportunities possible. However, this past year Bob has jumped through hoops to ensure the safety of his son and those taking care of him. When his treasured aide Grace was having difficulty getting to and from Grant’s parents’ homes from her hometown of Camden due to public transportation issues stemming from COVID, Bob took it upon himself to drive Grace to and from her shifts. Now, Grace, like many of Grant’s former aides, has been reassigned to a new client closer to her home.
“It’s a revolving door of aides—and Grant’s ability to continue to learn and habilitate is affected. The workforce is thinning out—and COVID is making it more difficult for people to enter the home healthcare industry because of the dangers of the virus and the unsustainability of low wages in the field.”
Grant and Bob were recently featured in a Scripps Networkpiece highlighting these exact issues that have plagued state-funded home health programs for years and have only been exacerbated due to COVID-19.
Bob continues to go above and beyond to advocate for his son in hopes that New Jersey’s governor and legislature will consider expanding access to home health care and services designed specifically for autistic and other developmentally delayed individuals. The state’s PCA program and many other home and community-based services (HCBS) are fully funded by the state. And—as the state population continues to age and as more individuals and the government see the health, safety, and cost-savings benefits of home care—it is important for state governments to ensure that the workforce is sufficient to allow residents and their families the care they need to stay safe in their homes, and as independent as possible within their communities.
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.
Home care industry groups, providers, and advocates across the country recognize the importance that the COVID-19 vaccine has on the home care community. The vaccine will help protect frontline caregivers, their vulnerable clients, and their loved ones from contracting the dangerous virus. But studies show that, currently, caregivers feel that they do not have enough information to make an informed decision about getting vaccinated.
Great news! The Partnership for Medicaid Home-based Care (PMHC)—a Washington, DC-based home care advocacy group—recently launched their “Be Wise, Immunize” website, designed to educate caregivers and the home care community at-large about the vaccine, address questions that have frequently been raised about the vaccine, and help guide individuals who are interested in learning more about the vaccine and signing up to receive their shot.
We need your help to keep our communities safe and healthy during the COVID-19 pandemic. If you have received the vaccine and are willing to provide a photo and/or a testimonial about your experience, please contact us today. We would love to feature you to help encourage other caregivers to Be Wise and Immunize!
Whether you are a professional or family caregiver, home care recipient, or otherwise, you know why home care is safer, more patient-preferred, and less costly than institutional care. Home care provides vulnerable seniors and adults with disabilities with one-on-one care that enables them to stay safe and independent in their own communities. While its benefits—and the inherent drawbacks of institutional care—are evident to us, home care is still not widely recognized as a long-term solution. This is because nursing home care is still often seen as the “default” option for those that need consistent care, particularly under Medicaid.
But tables are beginning to turn: As the COVID-19 pandemic has shed light on the dangers of nursing home care. With recent reports citing that a staggering 40% of COVID-related deaths have occurred in nursing homes, people are more widely recognizing home care as the long-term care setting of the future.
Home care saves state Medicaid programs money and helps vulnerable Americans stay out of costlier and more infectious settings like hospitals and rehab facilities. It enables more than 8.3 million Americans to remain healthy at home, thanks to the 3.2 million compassionate and dedicated frontline direct care workers, including home health aides and personal care assistants, that keep these at-risk populations safe, independent, and out of riskier institutional settings.
In a post-COVID world, home will become recognized much more widely as the care setting of the future. With the US’s aging population growing quickly, and with families’ recently-discovered reservations about placing their loved ones in a long-term care facility, it is important that governments across the country take steps to make sure that the home care industry grows proportionately along with the demand for it. This includes: Increasing state and federal Medicaid rates for home care services so that providers can raise wages and allow more caregivers to be recruited to the home care workforce; Rethinking outdated laws and regulations that allow vulnerable populations to more readily access nursing home care; and instituting built-in protections for Medicaid-based agencies, such as relief funding for extraneous costs that occur during an emergency like COVID-19.
A “Home First” mentality would allow for individuals to stay safe at home and away from group settings that encourage virus spread. Now more than ever, the potential dangers of institutional care are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age, and as more medically-fragile and disabled individuals are able to live independently. By updating laws to prioritize home care, we have the opportunity to create a meaningful, cost-effective and common-sense change to healthcare for the post-COVID future.
NJ Blog Takeover: Paraplegic Keith Braswell writes about his life with a severe disability – and how working with his aide through NJ’s Personal Care Assistant (PCA) program has helped him to live life on his own terms.
My name is Keith Braswell and a car accident in 2008 forced my entire way of life to change. I was left paraplegic and since then, I have been able to remain a vital, active member of my community thanks to the help of my home health aide, Quisela. As a 46-year-old adult, it can be tough for me to rely on someone else for everything from getting out of bed, bathing, eating laundry etc., but Quisela does everything she can to make sure that I feel safe and comfortable.
While Quisela is very reliable, filling all of my state-approved 40 hours of care without a day off, her choice to stay working as a home health aide is becoming more unrealistic by the day. This is because New Jersey’s Medicaid reimbursement rates under the Personal Care Assistant (PCA) program—the one that I and thousands of others like me rely on—don’t allow for aides to make a fairwage for the compassionate work they do. For example, in Newton, aides make minimum wage to slightly above minimum wage, and can often secure jobs with less required training, stress, and physical requirements at places like Walmart, Home Depot or Dollar General—all of which are located within the municipality or along route 206. This is especially true since NJ raised minimum wage in the beginning of year, while the Medicaid reimbursement rate remained stagnant.
I am beyond appreciative of how important Quisela’s vigilant and caring work is to my life, and I frequently go out of my way to make sure she is paid as much as possible, like booking my recent surgery around her vacation time to make sure that she wouldn’t lose any hourly pay. If I were to ever lose my aide, I would likely be forced into an institution which means losing what remains of my independence along with the quality of one-on-one care that I receive at home.
I humbly ask that the state legislature consider an increase in Medicaid reimbursement rates, so that individuals like myself can continue to choose to live independently at home. Many choices were taken away from me because of my injury, and losing this choice as well would be heartbreaking for myself and for thousands like myself across the state of New Jersey.
-Keith Braswell, Newton
About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email firstname.lastname@example.org.
When BAYADA Home Health Care client Jim Davies received a notice in the mail last year that his insurance would be transitioning to another agency, he tried not to panic. After all, the letter stated there would be no change, he would still receive coverage for his home health care nursing and personal care home health aide services.
However, Jim was not convinced. The 66-year-old, who
suffered a spinal cord injury as a result of a diving accident 20 years ago, is
nearly paralyzed from the neck down. He relies on his nurses for his complex
medical needs, which include wound care, range of motion exercises, mechanical
transfers to and from bed, medication administration, catheter care, and care
to prevent a serious complication called autonomic dysreflexia, which can lead
to seizures, stroke, or even death.
As a former sheriff and local fire commissioner, Jim is used
to working collaboratively with others to make things happen. That’s why he
immediately called a case manager at the insurance company, who reiterated what
was explained in the letter, his home health care coverage would not change.
to the end of the year when Jim received another letter, this time from the new
insurance company. Despite written and verbal assurance that his coverage would
not change, the new company denied his home health care services, insisting Jim
was stable enough and no longer needed nursing care.
Jim reached out to his BAYADA Mercer County Adults (MCA) office Director Meghan Hansen and Clinical Manager Sharon Wheelock who appealed the decision on his behalf, to no avail. That’s when they turned to BAYADA Government Affairs Area Director Louise Lindenmeier, who suggested Jim reach out to New Jersey Assemblyman Daniel Benson, a member of the state Health and Senior Services Committee.
home visit leads to positive change
called Assemblyman Benson’s office, I wasn’t sure what the response was going
to be, but I was pleasantly surprised,” says Jim. “The assemblyman made me feel
that as his constituent, my problem was a major concern, and he owned it.”
Benson visited Jim and his wife of 40 years Rosemary at their home to witness,
first-hand, the critical role home care nurses play in Jim’s health and
well-being. During the visit, Assemblyman Benson also learned about the
catastrophic medical consequences of stopping Jim’s nursing care and BAYADA’s
unsuccessful efforts to appeal the denial from the insurance company.
Following the visit with Jim, Assemblyman Benson jumped into action. He joined BAYADA Managed Care (MCO) Director Pamela Soni, BAYADA Area Director for Pediatrics Managed Care (MCP) Stephanie Perna, and Louise for a meeting with the NJ Department of Banking and Insurance to discuss Jim’s case. In addition, he personally contacted the insurance company to negotiate the contract, resulting in a reversal of the denial. Thanks to his efforts, the issue was resolved within two weeks.
really important to educate politicians on how insurance changes can impact
their constituents,” says Jim, who encourages others in similar situations to
reach out to legislators who may be more than willing to help. “Assemblyman
Benson should be recognized for his prompt and professional response to my
Benson considered it a privilege to play a role in helping Jim. “It was my
honor to work with Mr. Davies to ensure that he received the care he needs and
deserves,” he says. “As legislators, it is our sworn duty to represent our
constituents, and that means lending our assistance whenever possible, whether
by simply cutting through red tape or elevating a situation to a higher level
so that it is promptly addressed. I would encourage those in need to reach out
to their elected representatives to learn what they can do for them.”
Want to Help Make a Difference: Register
for Hearts for Home Care
Whether you can give a minute, an hour, or a day, there are many ways to get involved in advocacy. It can be as simple as sending a pre-written email to your local legislators, hosting a legislator in your home, or attending an event at a legislator’s office or your state capitol.To learn more, consider becoming a “Heart for Home Care” advocate. It only takes five minutes to register at heartsforhomecare.com. You’ll receive email updates about current issues and opportunities to make your voice heart.
The looming home health care crisis has recently been making headlines. From Home Health Care News to the New York Times, industry leaders, home health aides, clients, and family caregivers have been sharing the same message: As Medicaid rates continue to stagnate, home health aides and nurses can’t make a fair wage. As a result, the industry is facing a worker shortage and clients’ access to care is being significantly threatened across the country. Below, please find links to recent media coverage on the issue, all of which present compelling data that point to an impending home health care crisis for the most vulnerable and medically fragile populations.
This year, BAYADA proudly nominated 41 home health aides for
the Pennsylvania Homecare Association’s
(PHA) annual Direct Care Worker (DCW) of the Year Award. This prestigious
award, cosponsored by the Department of Aging, is meant to recognize the state’s
hardworking home health aides and reward an aide that has gone above and beyond
his or her duties.
On March 27, BAYADA’s nominees joined more than 200 other DCWs
from 50 counties across the state in Harrisburg, where nominees and guests
enjoyed a variety of activities and informational sessions during the Direct Care Worker Forum. PHA hosted a
DCW advocacy station that enabled aides to share their voice with legislators.
Guests also enjoyed recipe samples and learned about new activities to try with
clients. The highlight of the opening events was a Dementia Live simulation,
which gave attendees a walk in the lives of clients suffering from Dementia.
Guests were then invited to sit down for the official Awards
program. Each year, PHA recognizes all nominees for the outstanding work they do keeping thousands of older Pennsylvanians and
those with disabilities at home and in their communities. After all
nominations are received, PHA’s selection committee reviews each nominee and
picks one overall winner. As the ceremony began, PHA CEO Vicki Hoak welcomed the attendees with a thank you message from the
nominators for all the wonderful work they’ve done over the past year. Lisa Story, Founder and Executive
Director from the nonprofit Hope Grows spoke on the importance
of caregivers’ self-care. Finally, Acting Secretary
of Aging Robert Torres announced the winner of the year, El Hassania El Bedraoui from Jevs Care at
to all the direct care workers who were nominated for this year’s award. BAYADA
is proud to be involved with a program that demonstrates the state’s commitment
to elevating the direct care worker profession and spotlighting the value of
serving as a professional caregiver. Thank
you to all our home health aides—your compassion and hard work truly exemplify The BAYADA Way.
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 email@example.com for
information on what you can do to share your voice and support home health