In the 2000's, Marcy was working in military pediatrics and seeing children with neurodevelopmental issues, including autism. At the time, families had as long as a two-year waiting period for treatment. To help offer relief, Marcy started a pilot project involving nurses to assess developmental delays, getting children into therapy sooner rather than later. She is now a staunch advocate for children’s mental health and remains committed to early intervention.
It’s said that only 1 in 10 children who have autism are being diagnosed before the 1st grade, yet the CDC states that children that are diagnosed and receive services two years before going to school are more likely to reach their maximum potential. PNPs can be and are an answer to this gap in service initiation! Proper screening and testing is expensive and not being conducted. Access to care, unfortunately, is bound by geography where families in rural areas suffer most. Not having the finances to improve the mental health of one’s child is an enormous challenge.
I was introduced to how nurses can effect change while working as a registered nurse in a military pediatric clinic. The military was losing referrals due to the tremendous volume of initial consolations, the lack of qualified providers, and the shortage of civilian providers within the radius of their region of service. Average wait-time for military was 8 months – 1 year; while civilian wait-times were about two years. I presented a pilot project consisting of a nursing triage program that screened special needs families, providing them with a continuity provider for closer monitoring, obtaining early lab and hearing tests, obtaining referrals for therapy and psychological services, and introducing community services. The results: special needs children were able to receive services within 28 days of the consult, and wait-times decreased to 2–4 months.
Realizing effectiveness of change agents gave me the courage to go back to school obtaining my MSN and PNP. Genetics was obtained from Cincinnati’s Children Hospital 195 hrs. CEU’s course. My first PNP opportunity was in Houston at UT Health working in their autism clinic. The physician would interview the parent while I interacted with the child in the room. As the doctor conversed with the parent(s), she would point to behaviors and explain autism and its behavioral process. This visualization technique allowed greater dialogue with the parents, giving them time to process and understand the diagnosis’ progression. Follow-up was in a week or two after giving them reading material, further guiding their understanding of autism and answering any questions. Most importantly, we discussed the principle that this is a marathon, not a sprint. Children with autism change as they grow and receive therapy. We guided parents through life’s changes, giving them techniques to work through problems - especially transitions such as puberty and life after high school. We also became advocates for the parents within the school systems discussing goals and learning objectives which were tailored to the child's abilities.
The grieving process is difficult for the parent and clinician because there is no specific cure for autism. Parents get lost in a world of the internet and laypeople giving advice - some of which are non-evidence (E-B) base practices, dangerous, and not covered by medical insurance. PNPs need to be familiar with E-B resources. This is why I believe and participate in the SIG.
How can WE effect change in the world of Pediatric Behavior & Development using SIG:
• Become a PNP resource by helping design and share protocols that are evidenced-based.
• Share special support groups, community, and internet resources ideas.
• Conduct medical and nursing research sharing your experience and results.
• Share time-saving methods in your practice.
• Share your concerns – others may have solutions.
• Get involved with state and national legislation. Share them with SIG so we can be a combined force. Lobby and teach your patients how to lobby for themselves. We as professional need to speak out, write officials, and inform the media.
Learn more about our Developmental Behavioral and Mental Health SIG.