Sheltaya Williams is a single mother from Pittsburgh, and Brooklyn is her second daughter. She is her family’s only source of income, so it’s fair to say that Sheltaya has not had it easy.
And when Brooklyn was just six weeks old, a doctor saw that she had some problems at a post-natal check-up. Brooklyn had fluid in her lungs and was sent to hospital for what Sheltaya was told would be a short stay. Unfortunately, things turned out not to be so straightforward.
At the Children’s Hospital of Pittsburgh of UPMC, however, medical staff discovered that the flow of blood to her intestines was being severely restricted by clots. As a result, Brooklyn soon had to undergo a series of operations. These included Brooklyn having her stomach fitted with a tube, being put on a ventilator and undergoing a tracheostomy.
According to doctors, these complications may have arisen due to heart problems that Brooklyn was born with. She certainly hadn’t had the easiest start to her life. However, the struggles that this mother and daughter were to face didn’t end there.
Despite the various complications detailed above, Brooklyn nonetheless slowly began to recover. Sheltaya told Bloomberg, “After her third surgery she woke up with a smile that said, ‘I’m not going anywhere.’” Almost a year on, however, Brooklyn was still in hospital.
This is due to a flaw in the U.S. healthcare system, which makes it very difficult for parents to secure home-care nurses. Medicaid provides only a basic level of support, while the majority of insurance companies do not cover such nursing.
When it comes to medi-care issues, the headlines tend to be grabbed by Donald Trump’s ongoing efforts to repeal the Affordable Care Act. Concerns about the funding of the Children’s Health Insurance Program (CHIP) have also received plenty of media attention.
However, the plights of the likes of Sheltaya remain under-reported. Parents such as her are left in almost impossible situations, whereby they can barely afford to keep their children in hospital, but absolutely cannot afford to take them home. As Sheltaya is the only earner in her family, she is unable leave work to care for Brooklyn. Employing home-care nurses is her only alternative, but it has been thus far proven to be an unachievable one.
And Sheltaya is not alone in her struggles. Other families across America have faced the same heart-breaking dilemmas. Do they risk losing everything and care for their children at home, or do they raise their child in hospital?
Katie Lawrence faced similar hardships to Sheltaya with her son Jaxon. Based in Naperville, Illinois, Katie and her husband eventually decided to take their four-month-old baby out of hospital and care for him at home. As a result, Katie had to give up her job and, in doing so, her dreams of one day buying a family home.
In Fairfield, Conneticut, the DeCarlo family had to deal with the same issues. Lorena DeCarlo’s son, Lucas, was born with heart and brain problems, in addition to paralyzed vocal chords. Although Lorena had health insurance, because Lucas needed 24-hour attention it would only cover a few weeks of care for him.
As a middle-class family, the DeCarlos were exempt from Medicaid. Their family income superseded the threshold, meaning that they were reliant on the support that their insurance gave them. So eventually, Lorena had to leave her job to care for Lucas herself.
Lorena had to learn how to change a breathing tube to keep her son alive. She found the experience nerve-shredding and felt concerned that she was putting her son’s life in danger. However, Lorena, like so many other parents in need of home-care assistance, did not have a choice.
In America, 500,000 children suffer from severe health issues. This means that the families of just under one percent of the nation’s children may be desperate for help. A 2014 study found that these youngsters are the subjects of up to one-third of all healthcare spending for children in the U.S.
And some parents are being financially crippled by keeping their children in hospital purely because of lack of state funding. In one case in Chicago, a family were left with a hospital bill of more than half-a-million dollars after their child spent nine months being treated there. This was about three times more expensive than the cost of receiving 18 hours of medical home-care per day over the same period.
The system is also flawed in the sense that providing home-care nurses is typically cheaper than paying nurses in hospitals. Furthermore, according to Bloomberg, a 1967 law on the provision of Medicaid stated that it should cover any “necessary health care, diagnostic services, treatment, and other measures … to correct or ameliorate defects and physical and mental illnesses and conditions” for children aged under 21.
Moreover, the problems stem far beyond funding. Above all, there is also a severe lack of trained medical staff available to help. This is primarily because home-care nurses are paid low wages in comparison with hospital nurses. For example, in Massachusetts, home-care nurses earn $30 per hour, whereas hospital nurses earn $52 per hour.
Aimee Snyder, a nurse in South Carolina, recalled how she earned an abysmally low $9 per hour for working as a home-care nurse. This was less than in her job as a barista, in which she received a dollar more per hour, in addition to her tips. Snyder did subsequently go to the agency that employs her to lodge a complaint and, as a result, received a pay rise to match her barista rate. Nonetheless, she hasn’t received another rise in two years now.
In Pittsburgh, the shortage of home-care nurses is particularly acute. Sheltaya Williams has become so desperate that she’s resorted to pleading for healthcare assistance on Facebook. “I want to be able to wake up and see my baby, to not have to get into the car and drive to see my daughter,” said Williams. “We’ve been sitting here waiting and waiting.” As Trump continues to attack state provision of healthcare, it seems unlikely that Williams’ and other families’ situations will improve anytime soon.