Student Essay: Caring for Children with Developmental Disabilities

I hope you’ll enjoy this essay written by a UNC Chapel Hill School of Nursing Pediatric Nurse Practitioner student about caring for children with developmental disabilities.

A journey into refocusing my nursing specialty

By Katie Shattuck

 “So, what do you want to be when you grow up?” We have all been asked this question at various points during our lifetime, in kindergarten during sharing time, in middle school writing class, and then again in high school as we prepare for our entrance into college. I always knew that I wanted to “help people.”  This idea transformed into a solid career path toward nursing after watching my sister go through nursing school and work as a registered nurse in a nursing home.

I applied to graduate school knowing that I wanted to earn my master’s degree in nursing to pursue a career as a Pediatric Nurse Practitioner. At the time, I would have laughed if you said to me that I would find an interest in children with developmental or behavioral disorders. In the fall of my second year in my master’s of nursing program, I was offered the opportunity to participate in NC Leadership Education in Neurodevelopmental Disabilities Fellowship (NC LEND), a yearlong fellowship sponsored by the Maternal and Child Health Branch of the United States Department of Health and Human Services. The purpose of  NC LEND  is to provide training about the complex issues surrounding children with developmental and behavioral disabilities. 

            I started the LEND fellowship unsure of not only what was expected of me but also how I could or would tailor this opportunity to fit in with the care that I was learning to provide as a Pediatric Nurse Practitioner. I had only a cursory knowledge of developmental and behavioral disorders and very limited experience with the community resources set up for these patients and their families. What I have learned over the past eight months has astounded me and made me realize how truly disadvantaged individuals with developmental and behavioral disorders are in terms of the quality of care that they receive.

            Anne (name has been changed) is a perfect example of how common fragmented and ineffective primary care is for individuals with developmental and behavioral disorders. Anne was ten years old with a diagnosis of severe autism spectrum disorder. Her parents came to the behavioral clinic in which I was participating with the hopes that a developmental behavioral specialist would be able to help them with the extreme tantrum behavior that Anne was exhibiting. They were also looking for ways to deal with her lack of self-toileting skills and her repetitive playing of specific clips of television shows.

Anne was also overweight, had a family history of cardiac disease, and during the visit with the behavioral specialist had symptoms of a cough and runny nose that had been going on for ten days. Her parents had not taken her to her primary care doctor for the cough because they assumed that the specialist could take care of anything that may be wrong with her medically. Unfortunately, the specialist addressed none of Anne’s medical concerns; these would have to be discussed with her primary care provider.

At this point during the exam I realized what is missing in our current system. On the one hand, we have great primary care providers who diagnose childhood illnesses. Top-notch primary care providers acknowledge when a child is overweight and start a discussion with the child and family about how to achieve a normal weight. Excellent primary care providers understand that children with chronic conditions like asthma need to have their seasonal allergies under control to help keep their asthma under better control.

On the other hand, we have specialists that know the ins and outs of developmental and behavioral disorders. These specialists have the education to feel comfortable prescribing psychostimulants, antipsychotics, and antidepressants to children when needed. Specialists know how to navigate the world of community resources that the layperson cannot navigate. What we have are two different sets of providers. While each of them performs a necessary function to treat this special population of children and adolescents with developmental or behavioral disorders, they are doing so separately.

In nursing school we spend a great deal of time talking about how we should treat the whole person – we call this holistic care. After eight months as a LEND fellow, I am dismayed to discover that it is a rare thing indeed to find someone who can or will provide both pieces of the puzzle for this population. Some of the barriers prohibiting primary care providers from adequately treating children with developmental or behavioral disorders include lack of insurance company reimbursements, time constraints in busy practices, and being uncomfortable with using screening tools to help diagnose children with developmental and behavioral disorders.

             In order to provide the quality, holistic care that we as nurses and advanced practice nurses have set as our standard, we need to make sure that we have the knowledge to treat these patients. We need to make sure that we willingly embark upon lifelong learning in the area of developmental and behavioral disorders to make sure that we are fighting against the norm of fragmented care in order to provide quality care to a most underserved population.

If you asked me today what I want to be when I grow up, I would still say that I want to “help people.” However, I would just be sure to state loud and clear that my goal is to “help provide cohesive, comprehensive care to children and adolescents with developmental and behavioral disorders.” I encourage you to do the same.

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