NJ Mom Dana Insley: Support Children like Abi: Raise Wages for Nurses who Care for New Jersey’s Medically Fragile

NJ Blog Takeover: Dana Insley writes about her medically-complex daughter, Abi’s, story—and how NJ’s Private Duty Nursing (PDN) program has helped her overcome her circumstances.

Abi Insley relies on in-home nursing to stay safe and healthy at home

My 8-year-old daughter Abi had the unfortunate circumstance to be born into the wrong family. After a perfectly healthy start with her twin sister, they were saved from their parents’ abuse at two months old: broken, beaten, and shaken within an inch of their lives. After months in the hospital, we were able to bring Abi’s twin sister Gabi home to be adopted, while Abi’s condition continued: She was declared brain dead twice, was dependent on a ventilator to breathe, and we were told she was 100% deaf and blind, and that she would never eat, speak, or breathe on her own.

It took two years of fighting until we were finally able to bring her home with pediatric skilled nursing home care services—a benefit that she receives under New Jersey’s private duty nursing (PDN) program. Without this program, Abi would likely still live in a full-time skilled nursing facility today. It is because of these incredible nurses that Abi has been able to beat her original diagnosis—she is thriving at home alongside her parents, siblings, and nurses, who are like family to us. But every day remains a challenge—Abi needs round-the-clock attention for her medical complexities, and yet we are unable to fill all the nursing shifts that she is prescribed and medically authorized for. When even one shift is missed, that means that my husband and I, who are not medical experts, must act as her nurses. We often miss out on sleep, and on caring for our other children. We consistently struggle to fill five or more shifts every week, and this not only puts Abi’s health in danger, but also puts her at risk to end up back in a facility, or worse.

The problem lies in low state funding rates for the PDN program, which has not been increased in over a decade. In that same time frame, costs of living and wages for nurses in other settings, like hospitals and nursing homes, have steadily risen. Now, nurses are leaving the home care industry to take jobs at facilities where they can earn more and better support their own families. BAYADA and other home care providers struggle to hire and keep enough nurses to meet the demand, and as a result, families like mine suffer. 

Abi has overcome so much, but her abusive past has left her medically-complex for life. Amongst her myriad of health issues, she is legally blind, suffers from a rare life-threatening form of epilepsy, and she requires special medical equipment to eat. This is not a child that we can simply hire a babysitter for. Her high level of care and constant need for monitoring makes it impossible to have any sense of normalcy without capable & consistent nursing support.

Abi’s nurses and their presence in our lives, have impacted our whole family. The all-consuming task of caring for a medically fragile child requires specially-trained, consistent, reliable, skilled nursing care. Her incredible nurses have become an integral part of our home and of her care. Because of her nurses’ attentive care, many health issues that have arisen have been addressed early, rather than mounting into serious ones. Her nurses have been with her through countless sicknesses, surgeries, therapies, and more doctor appointments than we could possibly count. But as home nursing wages have remained stagnant over 10+ years, we can’t blame the nurses that have had to take full-time positions elsewhere. But we are constantly hoping and praying for some relief.

No child deserves to grow up in an institution.  My precious daughter brings many challenges to our home, but it would be heartbreaking to have to put her in a facility for lack of nursing support. I urge the state legislature to consider increasing funding to the PDN program. Competitive wages would bring stability to her home care nursing and allow our family and families like us to stay together and thrive. Please choose to make a difference.

-Dana Insley, Sicklerville

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

NJ PCA Beneficiary Keith Braswell: New Jersey Paraplegic’s Life Put on Hold When Home Health Aide is not Available

Many New Jersey seniors and adults with disabilities are able to stay safe and independent at home due to assistance from Home Health Aides (HHAs) under the state’s Personal Care Assistant (PCA) program

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 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

New York State Budget Finalized with $550 Million Increase Restored for Medicaid Funding

Earlier this year, New York Governor Andrew Cuomo announced his plan for the 2020 state budget, including a 3.6% planned budgeted increase to overall health care spending. When proposed tax revenue estimates came in much lower than anticipated, the administration decided to cut approximately $550 million of this increase. But after strong advocacy efforts from many health care groups across the state, the Governor and his administration changed their position, keeping the $550 million Medicaid increase in the budget.

BAYADA’s Government Affairs Office (GAO) participated in several conference calls with the New York State Home Care Association (HCA) to learn more about Medicaid spending, which accounts for 42% of the budget, and what we and our office staff, clients, and families can do to advocate for higher wages for home care nurses through increased reimbursement rates. 

Currently, New York’s Medicaid reimbursement rates are well-below surrounding states, so many caregivers are discouraged from entering—or staying in—the home care industry due to abysmal wages. It also impacts BAYADA because the rates are currently so low that we are currently not be able to provide sustainable Medicaid-based home care in the state and pay caregivers an appropriate wage.

As part of a larger national trend, New York did vote to increase the statewide minimum wage to $15 per hour incrementally through 2021. New York understands that home care providers that do provide Medicaid-based services would not be able to comply with this minimum wage mandate and stay sustainable under current rates. The final budget did include an additional $1.1 billion to support the cost of raising minimum wage for health care workers. BAYADA is currently advocating for similar increases in other GAO states that have increased the mandatory minimum wage, but have not increased reimbursement rates in tandem. Medicaid rates must keep pace with the rising cost of living and increased wage mandates to ensure that providers can stay in business, and to ensure that vulnerable New Yorkers can have access to quality home care.