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!
March is National Cerebral Palsy (CP), Traumatic Brain Injury (TBI), and Multiple Sclerosis (MS) Awareness month ─ Hearts for Home Care celebrates, educates, and spreads awareness about how home care benefits those diagnosed with these disabilities! To honor our advocates who share their voices on behalf of the many others living with these three diagnoses, Hearts for Home Care is rounding out March with a spotlight on five clients with CP, TBI, or MS.
Cerebral Palsy Awareness Month: Client Spotlights
Cerebral Palsy (CP) is the most common motor disability in a child. CP is a number of disorders of the developing brain that affects body movement, posture, and muscle coordination ─ 1 in 323 children have CP. However, because of home care, those affected are able to thrive at home independently with the help of their dedicated caregivers.
Haley Shiber is a 23-year-old artist, storyteller and advocate who lives with a form of Cerebral Palsy. Haley is wheelchair-bound and has used a communication device to speak since she was only a year old. However, her diagnosis has not held back her passion for advocacy! Haley worked with Delaware legislators throughout her young life to ensure that individuals with disabilities are empowered to live full and happy lives. Through Delaware’s Private Duty Nursing (PDN) program, Haley receives life-sustaining care from qualified nurses and home health aides that allow her to pursue her many passions including socializing with family and friends, gardening, reading the classics, riding her adaptive bicycle, and creating art.
Jenna Owen just turned 20 this past Friday, March 26! Happy Birthday Jenna! Jenna was born a twin with her sister Jade at only 28 weeks old, but sadly, Jade passed away in 2018. Jenna was diagnosed with Soto’s Syndrome and CP at a young age, so she is wheelchair-bound and relies on a speaking machine to communicate. She receives vital, in-home care from dedicated and qualified caregivers who allow her the independence and freedom to thrive at home. Jenna’s mother Phyleischa, is an avid supporter and advocate of home care. Most recently, Phyleischa sent a letter to Florida Governor, Ron DeSantis advocating for higher reimbursement rates for home care nurses as staffing shortages have become a serious and ongoing issue.
Davis is 27 years old and suffers from CP. He requires high-level of nursing care from a team of caregivers to keep him safe, comfortable, and thriving at-home. Due to Davis’s condition, he receives his medication and nutrition through a feeding tube and his nurses also must monitor his airway and medications. However, because of his dedicated nurses like Debbra, Davis still enjoys life surrounded by family and friends and watching his favorite TV shows! Davis’s dad, John: “I am grateful for the nursing services that BAYADA provides. The level of personal care Davis receives from the nurses is critical to his overall well-being. I can’t thank them enough.”
The CDC estimates over 1.7 million Americans suffer from a Traumatic Brain Injury (TBI) each year. About 80% are released from the hospital and go on to live mostly normal lives. But many suffer challenges for years to come and need care at-home to remain independent.
In June 2016, 22-year-old Matt Mayer suffered a tragic automobile accident, resulting in a Traumatic Brain Injury. After several months in various hospitals and over two years spent in a rehabilitation center, Matt was reunited with his family full-time in 2019. Due to the severity of Matt’s condition, he now requires a trach, feeding tube, and full team of specialized daytime and nighttime nurses in order to safely go about his daily life. As a result of Matt’s accident, he has been nonverbal and without most purposeful functions in each of his limbs for over 4 years.
Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body ─ and leads to symptoms such as numbness and tingling, muscle spasms, walking difficulties, and pain. MS is estimated to affect about one million people in the U.S.
John Williams is 76 years young and a military veteran. He served in Vietnam twice as Airborne in the 82nd Division ─ once from the draft and a second time as a volunteer. After retiring from 22 years of military service, he became a police officer and served his community for another 22 years. John was diagnosed with MS at 60 years of age, has dementia, and is now wheelchair-bound. However, he still living life to the fullest thanks to his compassionate home caregivers who help him live independently in the comfort of his home! John says he would do it all over again for his family and country.
John’s daughter Molly: “For my family, home care is very important. My dad has MS and dementia, but still wants to stay very independent. I live in Maryland and he lives in South Carolina, so home care gives us me the peace of mind that he is taken care of and can continue living his life with freedom. I’m very thankful for BAYADA and for his dedicated caregiver Arshala.”
Hearts for Home Care is a community of advocates that seek to share their voices and experiences to bring greater awareness of home care’s importance and impact on individuals with limitations and disabilities. Caregivers, family members, and individuals who are interested in advocating can contact us at email@example.com.
While much of the home health care community continued to reel from the onslaught of challenges faced from the COVID-19 pandemic, Hearts for Home Care advocate and BAYADA Home Health Care office director Cathy Slack has remained focused on the many positives. Namely, throughout the pandemic, she witnessed many caregivers, office staff, clients, and families advocate for better access to care, and also witnessed the state government’s response to hearing these voices.
One of the major wins that New Hampshire’s home care community saw as a result of their continued advocacy was the development of the Long-Term Care Stabilization Stipend Program (LTCSS), which served to borrow money from the state’s General Fund in order to offer stipends to essential healthcare staff to continue to work throughout the pandemic.
The state’s actions created an incredible domino effect that kept the positive changes coming. In Cathy’s office, coverage hours and the number of employed nurses both increased as RNs and LPNs transferred their passion for caregiving from their usual settings to the home care community. One such example is former full-time school nurse Laura Walker, who came to home care full-time after COVID suddenly halted normal school activity. Her transition was an immense positive for both Laura and her pediatric client, G, and G’s family. Laura’s care enabled them to feel security and peace-of-mind as G’s medical and academic routine suddenly flipped without warning.
“One day my medically fragile, intellectually disabled child went to school every day from 8 am to 3 pm where she was cared for by a nursing team and then came home to nursing services from the time she got off the bus until she went to bed. G’s school transferred to remote learning seamlessly, but how would my daughter respond to this new way of learning?” said G’s mom Michele. “My biggest concerns were: would she remain engaged without the school nurse keeping her safe, and how would she remain healthy at home with this gap in medical services? This is where Laura stepped up and went above and beyond.”
“These nurses put their own safety on the line to not stay home every day but to come out and care for our child. The stipend they earned through the state’s program was well deserved and I am grateful as a parent and a citizen of New Hampshire that the monetary recognition was given,” says Michele.
Michelle’s testimony is one of many that shows how medically-fragile families were given a lifeline through LTCSS during a time of uncertainty. Thank you to the many Hearts for Home Care Advocates, and to the State of New Hampshire, for making this lifeline available to the many residents that need home care to stay safe and healthy at home. To find out more about how Hearts for Home Care operates in New Hampshire or elsewhere, contact us at firstname.lastname@example.org.
NJ Blog Takeover: Michelle, who is the sister of TBI Victim Brandy Lino-Corona, writes about her sister’s life after becoming severely disabled – and how working with nurses through NJ’s Private Duty Nursing (PDN) program has helped her family define their new normal.
victims of traumatic brain injuries, access to reliable home health care can be
the deciding factor that keeps people either permanently institutionalized, or
at home with their loving families. My 17-year-old sister, Brandy, suffered a
Traumatic Brain Injury (TBI) from a severe car accident in September of 2018.
Since then, the state of New Jersey has authorized 16 hours of specialized
nursing care per day for Brandy. This care allows her to stay safe at home, and
allows my father, mother, and I to lead proactive, fulfilling lives outside the
home. However, Brandy rarely receives all of her authorized hours due to New
Jersey’s inequitable Medicaid reimbursement rates for their state-funded
Private Duty Nursing (PDN) program.
The severity of Brandy’s injuries left her incapable of
moving, eating and even breathing on her own. Nurses that work with her need to
be up-to-date on life-saving techniques such as tracheostomy care, respiratory
treatments, suctioning, monitoring vital signs, feeding tube care and feedings
and administering meditations. Additionally, Brandy must be readjusted every
two hours in order to combat her risk of skin breakdown and bedsores. This
regularly poses as an obstacle when nurses miss their scheduled shifts as this
task requires two people due to her size.
Like so many medically-complicated residents of New
Jersey, my sister is at risk of institutionalization and/or hospitalization
without the proper nursing care she requires. With potential caregivers
persuaded by competitive wages and less physically and mentally taxing
employment, eligible patients’ access to qualified healthcare professionals
diminishes. New Jersey’s legislators need to consider the plight of their most
vulnerable constituents and make the decision to increase Medicaid
reimbursement rates. An increase in New Jersey’s Medicaid reimbursement rates
would provide a second lease on life for Brandy and those like her, as well as
instill a sense of hope for their families whose only desire is to be able to
continue to care for their loved one in their own home.
-Michelle Lino, Absecon
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 email@example.com.
The facts are clear: Home care is less expensive than
hospital or other institutional care. Plus, it enables medically complex
children and adults to remain at home amongst their loved ones. But because the
State of South Carolina has not increased reimbursement rates for skilled
nursing home care services since 2008, families are finding it increasingly
harder to access the skilled, high quality care that they need to stay as
independent as possible in their communities.
State funding for home care has not been increased in more
than a decade. At the same time, hospitals and other facilities have been
steadily able to increase wages. Even more so, nurses can make more in home
care in surrounding states. Now, home care providers find that they can compete
for less than a quarter of all the nurses available in South Carolina. When
agencies face such recruitment and retention struggles, home care recipients and
their families suffer.
When there are less home care nurses available, families
find that they experience missed shifts, which can not only create undue stress
and chaos as loved ones must miss work, lose out on sleep, and forego other necessary
activities—but it also puts the client in danger. For those who need skilled
nursing care, missed shifts can mean dangerous consequences, including trips to
the ER and unnecessary hospitalizations.
Even more so, many major home care providers have already
left South Carolina because of the low funding for home care. Stagnant rates
that are more than a decade old make keeping their doors open unsustainable. As
more and more agencies leave the state, the harder it is for families to access
care. Simply put, if the State does not take action to increase funding for
home care, South Carolina’s most medically complex and vulnerable families will
have few options for care.
South Carolina’s concerned families are making their voices
heard: They are reaching out to their legislators and media to share their
message: Increase funding for home health care so that families can access the
high quality, reliable care that they need to be where they want to be: At