South Carolina Families Struggle Due to Lack of In-Home Nurses

William Walker is pictured with his parents Christina and Aaron. The Walkers are looking for an in-home nurse so that they can finally bring William home.

Just like many new parents across South Carolina and the US, Christina and Aaron Walker are excited to bring their newborn baby boy–William–home from the hospital. But unlike most other new parents, they can’t. That’s because William was born a little more than three months early, with medical complications.

But it’s not the complications themselves that have restricted William to the NICU–but rather, the lack of in-home nurses in the state. Baby William is medically cleared to go home, but the hospital cannot discharge him until an in-home nurse is available to care for him at the Walkers’ Bradley residence.

“The State hasn’t increased funding for the Private Duty Nursing (PDN) program in more than a decade. As a result, agencies that hire and provide in-home nurses to families like the Walkers can’t recruit and retain enough nurses to keep up with the demand,” says BAYADA Government Affairs Director for South Carolina Melissa Allman.

In the past decade, costs of living have gone up tremendously, and so home care agencies are struggling to pay nurses fair wages and stay sustainable as the funding has stagnated. PDN program funding must cover nurses’ wages–plus training, benefits, supervision, and supplies. Rates are so low, that many agencies have even left the state entirely.

Moreover, nurses are attracted to institutions and other settings–such as nursing homes, hospitals, and doctors’ offices–where they can earn more in wages. “The backwards part is that the state can save money and keep families together by keeping medically-complex residents at home and out of institutions. It’s a win-win,” says Melissa.

Christina and Aaron are celebrating every milestone that William reaches in the hospital. At five months, they are more than ready to take their baby boy home. Children deserve to grow up at home among their peers and loved ones. But if the state does not address PDN program funding in a way that ensures agencies can stay sustainable and raise nurses’ wages, then there will be more cases like William’s, where parents must continue to visit the NICU or another facility to see their son or daughter.

Read more about William’s journey here. If you know of a qualified nurse that is interested in caring for William, contact BAYADA Home Health Care at 864-448-5000. If you would like to learn about ways in which you can advocate for better nursing wages in South Carolina or elsewhere, contact Hearts for Home Care at advocacy@bayada.com

The Power of Advocacy: Remembering Katie Beckett, March 9, 1978-May 18, 2012

Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver. 

President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett, on the tarmac of Cedar Rapids Municipal Airport on September 20, 1984

 

Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.

Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.

Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.

At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.

At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.

Secretary Schweiker also created a review board to handle similar cases.  Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.

Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.

The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.

Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”

If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email advocacy@bayada.com today.

Rest in Peace Katie, your legacy lives on.  – March 9, 1978-May 18, 2012.