Home care affects more people beyond the individual who directly receives that care. One reason so many across the US prefer home care over institutional care is that it keeps individuals at home among their friends and loved ones. But when home care is not readily available—in large part due to the low wages for in-home caregivers as a result of low state funding formulas for home care services—medically fragile individuals and the communities around them suffer. From training new caregivers to calling out of work and losing out on sleep when caregivers call out or leave the workforce for better-paying jobs, mothers of home care beneficiaries are often the ones that bare the brunt of this ever-present and growing workforce challenge.
In recognition of Mother’s Day, below find two stories from single mothers of home care recipients who share their challenges and hopes for more reliable home care services.
Marie Kolat, mother of 22-year old Matthew – Pittsburgh, PA
“All mothers are superheroes… We are responsible for meeting our children’s needs every day,” says Marie. “But there are many special children in PA and across the country that need additional supports. I’m hoping that the State understands why individuals, mothers, and all different types of families are struggling, and how they can help us regain some sense of normalcy.”
Marie K.’s two children—Matthew and Sarah—have brought her many joys and surprises throughout her life.
Matt with his sister, Sarah (left) and mom, Maria (center).
“Nothing has been more rewarding than being a mother,” says Marie. But she will certainly remember COVID as one of the most challenging and trying times during her journey as a single mother. Matthew, 22, is intellectually & developmentally disabled with Autism. He is non-verbal and requires round-the-clock supervision. Before the spring of 2020, Matthew was attending school and had a regular routine. But since the onset of the COVID pandemic, everything has changed—his schooling, his ability to receive psychological and medical care and—very significantly—his family’s ability to access the home health aide (HHA) care that Matthew needs and is qualified to receive.
Matthew is authorized to receive 98 hours of HHA care through PA’s personal assistance services (PAS) program. PAS allows for the state’s most vulnerable adults and seniors to access caregiving services that allow them to live at home and stay out of costlier institutions like hospitals and nursing homes. But—apart from the care that Matthew receives from his mother and sister—it is incredibly difficult for the Kolat family to access consistent HHA services.
Matt with his mom, Maria, visiting Lake Erie. Maria says that Matt “enjoys the feeling of the sand and water, and especially of the wind in his face.”
“Aides are leaving the caregiving field to work at big retail like Walmart and Amazon—or in fast food,” says Maria. “They can make $15 an hour or more there. When we see a revolving door of aides, Matthew can’t get the one-on-one care he needs, which puts him at risk. It also affects my ability to consistently provide for my family.”
At the end of the day, when aides are not being drawn into working in home care, it’s Pennsylvania’s most vulnerable residents like Matthew that suffer. PA home care moms like Maria are asking the State to increase funding for the PAS program. Additional funding would put home care agencies in a better position to recruit and retain more HHAs, and thus ensure that PAS beneficiaries can continue to access the care they need to stay safe and healthy at home.
Kristy Crowley, mother of seven–including 4 medically fragile children – Ruby, South Carolina
“At the end of the day it’s these children who are at risk when home nursing care isn’t available,” she says. “They are truly incredible and I learn so much from them every day. I hope that the State recognizes why they need—and deserve—to grow up in a loving home.”
Kristy C. believes that caring for medically-fragile children is her life’s calling. Through several of South Carolina’s programs—including the State’s private duty nursing (PDN) program—Kristy has been able to foster and adopt many children over the course of the last ten years that would otherwise not be able to grow up in a loving family setting.
Kristy with her five of her seven children.
Being a single mother devoted to bettering the lives of children with significant health challenges is not easy. Children with significant medical fragilities require specialized skilled nursing services to be able to continue to live at home and remain out of institutions like hospitals and long-term facilities—which would cost the State more money and would not afford children the loving childhood experience that they receive under Kristy’s care.
But Kristy faces significant hurdles in being able to access the care that her children need to stay safe and healthy at home. Across the state, home care providers have been unable to recruit and retain enough in-home caregivers to keep up with the needs of 36,000+ medically-fragile South Carolina residents that qualify for care. This is in large part due to inadequate funding for PDN and other home care programs, which do not allow for home care providers to offer competitive wages. “Nurses can earn more money in hospitals and facilities—which is exactly where these children should not be,” says Kristy.
Kristy Crowley from Ruby, SC.
Right now, Kristy works with three different home care agencies to try to get enough nursing coverage to keep her children safe and healthy. Rural areas like Ruby have been hit especially hard by this shortage of in-home nurses. Without reliable nursing coverage for her children, Kristy has had to quit her job as a preschool teacher. She often misses out on sleep and personal care—and even struggles to even go to doctors’ appointments if there is no one available to care for her children.
Kristy has sacrificed much in her devotion to the children that she has fostered and adopted, and never regrets a minute of it. But she recognizes the critical shortage of in-home nurses and hopes that SC legislators can understand how increased state funding for the PDN program will allow for more nurses to be attracted to home care.
Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. 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 protected] or visit our website in order to learn more about the home care advocacy community and find opportunities to get involved.