My son deserves a normal life. New Jersey must invest in private duty nursing for that to happen. | Opinion

By Noriko Kariya

My son Tetsuhiko (T.K.) is like a typical 13-year-old in many ways: He loves his peers, his TV shows and his books. But he is atypical in one very distinct way: T.K. has a very rare form or Septo Optic Dysplasia, which means that he requires consistent skilled nursing care to be able to live as normal a life as possible.

As a result of TK’s condition, he suffers from life-threatening seizures that cause TK to stop breathing and requires the immediate intervention of a skilled nurse. Through NJ’s private duty nursing (PDN) program, T.K. is able to attend school with a skilled nurse who monitors T.K. throughout the day, ensuring he is able to safely participate in all activities and receive an education as every child should.

Needless to say, PDN has been a lifeline to my son, my family and to hundreds of other New Jersey children who also deserve to live a complete and normal life despite their diagnoses. But there is a major issue: While PDN is vital to children like T.K., it is not readily available. Nurses who work in PDN are woefully underpaid due to inadequate state funding for the program. Nurses routinely leave the PDN field to take jobs in hospitals and nursing homes, where they can earn much more in wages.

T.K. once experienced consistent nursing care when he regularly attended school with his beloved nurse Justina. But in the past few years, we have seen a revolving door of nurses as they work in PDN but quickly move on to a hospital or other facility. When we face high turnover, new nurses must be trained on T.K.’s needs. Even worse, when there is no nursing coverage available, T.K. must miss school altogether and I myself must skip out on work, sleep and my responsibilities to cover that care.

Every parent — regardless of the health status of their child — understands why their son or daughter benefits from consistent, reliable care. A nurse that works with T.K. daily knows his signs and symptoms and can recognize and address an issue before it becomes a medical emergency. They also develop a trusting bond, which is so important to T.K.’s overall growth and well-being.

Not only does PDN ensure that T.K. is safe and healthy in his day-to-day life as he learns about the world and gains knowledge and social skills, but it also allows me the peace of mind and freedom that I need to be able to work part-time to contribute to my family’s needs.

The state of New Jersey has made much-needed investments in PDN and other home care programs. But the issue is that the current funding formula does not meet current realities: Gas, groceries, and other costs of living have risen sharply in the past couple of years, and the competition for the nursing workforce has shifted as hospitals, nursing homes, and traveling nursing agencies have begun to offer more than $10 an hour over what home care agencies can pay.

The state Legislature has proposed a $1 per hour increase to PDN funding in the upcoming budget. But that’s simply not enough to make a dent in the PDN workforce shortage. I urge the state legislature to further invest an additional $2 per hour in PDN funding so that more nurses can be attracted to PDN work, and so fewer families like mine can be impacted by high nursing turnover, missed shifts and gaps in coverage.

All children deserve to grow up at home, attend school and live a normal life. But when the proper systems and supports aren’t there, children with skilled nursing needs are left behind.

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