Testimonial

Jennifer Boyle shares her experience caring for her son Sean, who has profound cerebral palsy and other complex medical needs, emphasizing the vital role of private duty nursing (PDN) in supporting his health and quality of life.

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I am the proud mom of two young men: Sean, who is 22 years old, and Sam, who is 19 years old. Today, I will be focusing on my older son Sean. 

Sean loves music and spending time with his family. He loves Pixar movies, being in nature, assisted hiking, and riding his adapted bike. He was a Cub Scout and a Boy Scout in our town troop, and he enjoys contributing to his community in all the ways he can. Sean can use a communication device that he controls with his eyes to express his thoughts and needs. 

Sean is also living with an intellectual and developmental disability, profound cerebral palsy, a feeding tube, an intractable seizure disorder, and other medical issues. He requires comprehensive assistance 24 hours a day, now and for his lifetime. 

Sean was born with profound disabilities and medical complexity, and my husband Neil and I did our very best to care for him. We became exhausted from the litany of new challenges—from feeding difficulties and slow weight gain to status seizure emergencies, hospital stays, testing and evaluations, and hundreds of doctor and therapy visits. We were overwhelmed and needed help. I applied for private duty nursing when Sean was three, and he was approved for 16 hours a day of nursing care. With this vital support, our lives began to turn around. 

For the first time, Neil and I could sleep through the night a few nights a week. We could leave the house together and know that Sean was safe. Having small breaks was restorative, and it allowed us to better care for Sean ourselves. 

Because of PDN, Sean was able to go to school with the level of care he needed, making his education possible. His nurse also likely saved his life on one occasion; he had a crisis on the bus that could have been catastrophic if his nurse had not acted quickly. 

Over the years, Sean has been fortunate to have many wonderful nurses. They’ve been caring, dedicated and beyond helpful. Rita Olcay is a great example of a PDN who brightened our home with her excellent care. She was an experienced and skilled professional, and we felt completely confident in her abilities. She followed Sean’s care plan with careful attention to all of his needs, and she handled emergencies with calmness and skill. 

Rita was much more than a provider of nursing skills, however. She brought her whole self into our home; her attention, her training, her heart and her spirit. Rita talked with Sean and learned his facial expressions and his body language. They had inside jokes and silly times together, and we loved to hear them singing and laughing. It was beautiful! Rita also knew when I needed a word of encouragement, and her support helped me care for my family with more love and patience. 

We are so grateful for Rita and for our many nurses over the years – they have made a world of difference to Sean and our family! 

Thankfully, Sean’s health stabilized as he grew, and he now requires less nursing intervention as a young adult. I am relieved and grateful for Sean’s improvements! This is

 not always the case, however; many young people with complex medical needs continue to require same level of care as they grow up – or even more PDN support. And there is an intensifying shortage of PDNs, especially for individuals who rely on Medicaid to pay for nursing care. Medicaid funds nearly all of the nursing hours for people living with developmental disabilities and medical complexity, but nurses have many options and can earn far more in other care settings. Unfortunately, this means that many people with complex medical needs have unfilled shifts and are lacking the support they require. This PDN reimbursement disparity needs to be urgently addressed so that people with disabilities and their families can have the help they need. 

In summary, private duty nursing has made an enormous difference in Sean’s life, allowing him to safely go to school and to participate in his community. This vital support has enabled a colorful and meaningful life despite his challenges. I don’t know where Sean and my family would be without the support of PDNs! 

I urge you to preserve the availability of private duty nursing for our most vulnerable citizens. Additionally, I hope you will act to make the Medicaid PDN rate more competitive - so that private duty nurses are available to all who need them. 

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Jennifer Boyle  

North Caldwell, New Jersey