Hearts for Home Care Brings Legislative and Public Awareness to over 43 Million Viewers

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 Director and Hearts for Home Care’s Senior Ambassador Hakeem Gaines speaking to reporters about the workforce shortage and retention issues with North Carolina’s Private Duty Nursing (PDN) program.

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!

Celebrating and Recognizing Individuals with CP, TBI, & MS

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 painting with her long-time nurse, Jen Saulsbury.

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.

Fun fact about Jenna: She loves The Wiggles, all kinds of Disney music, and the mall! She also eats mashed potatoes and gravy just about every day!

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 with his dedicated nurse and the 2017 LPN National Hero, Debbra.

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.”

Traumatic Brain Injury Awareness Month: Client Spotlight

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 Awareness Month: Client Spotlight

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 advocacy@bayada.com.

Together, we can leverage our voices to tell state and federal decision-makers, “I care about home care, and you should too.”

In New Hampshire, Home Care Advocacy Brings Results

BAYADA Home Health Care’s pediatric client G (Gina) with her her nurse Laura.

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 advocacy@bayada.com.

Michelle Lino-Corona: New Jersey Paraplegic’s Life Put on Hold When In-Home Nursing is not Available

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.

Brandy’s family and caregivers surround her bed in her Absecon, NJ home

For the 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 advocacy@bayada.com

South Carolina Families Suffer as Reimbursement Rates Stay Stagnant for Over a Decade

Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians
Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians

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 home.

To find out how you can get involved in advocacy, contact us at advocacy@bayada.com today.