In recognition of National Family Caregivers Month, we spoke with Nancy Giurato, a family caregiver advocate based in North Carolina. Nancy is a caregiver leader with the Changing the Care Conversation Project, a 10-state coalition of grassroots advocates led by and advocating for family caregivers. You can follow the work of North Carolina family caregiver advocates at the North Carolina Coalition on Aging and the North Carolina Serious Illness Coalition. In this blog, Nancy shares her family caregiver story and shares important advice for other family caregivers who are growing as advocates.This interview has been edited for length and clarity.

Can you tell us about your caregiver story?

My caregiving story started with the birth of my children. Anthony is my oldest child, diagnosed with autism spectrum disorder (ASD) level 3 at age 2. Isabelle is my youngest, diagnosed with trisomy 18 or Edwards Syndrome, a rare genetic condition that results in intensive healthcare needs and significant neurodevelopmental disabilities. Trisomy 18 is the second most common congenital syndrome after trisomy 21 or Down syndrome. However, the live-born prevalence in Trisomy 18 is 1 in 6,000 thousand babies. Isabelle, or Izzy, belongs to the 13% of children with Trisomy 18 who survive passing their one-year birthday!

As loving parents and caregivers for Izzy, we have learned to live one day at a time and cherish every milestone that our tenacious girl accomplishes. We have also learned to advocate and bring our voice to the table. Our advocacy behind her care during her first months of life and before bringing her home resulted in positive outcomes.

Advocating for a baby with medical complexities those first days and months of life was exhausting and at times overwhelming. While in the Neonatal Intensive Care Unit (NICU), the medical team recommended comfort care and denied interventions. My husband and I were proactive in communicating to the team our desire take into account our views in favor of medical interventions and surgical procedures that can translate to positive outcomes. Izzy is one of the 80% of children with trisomy 18 that was born with a heart defect and needed surgery survive.The NICU team denied this life-saving surgery many times citing it is too high risk even though research shows that as high as 85% of children with trisomy 18 survive cardiac repair surgery. Through strong and constant advocacy and with a new team of doctors that were willing to see beyond a diagnosis, Izzy had her life-saving heart surgery at six months of age. We thought at that time that we would start our preparations to bring Izzy home but she had other plans and ended up staying in the hospital for almost two years due to several other diagnoses that came along and required intervention.

Izzy came home with 24/7 home health nursing. Unfortunately, Izzy came home right before the COVID-19 pandemic started and as the pandemic advanced,we lost all the team of nurses caring for Izzy at home. It was time to adapt our family dynamics and assume round-the-clock care for Izzy while at the same time helping Anthony struggled with remote learning and without much opportunity for social interactions with peers of his age.

Our advocacy for Izzy continued as she moved out of early intervention into the education system having intensive health care needs and significant developmental disabilities.

Our goal is that educators see Izzy in a holistic way utilizing multisensory learning techniques that allow Izzy to access her education and become as independent as she can be. Izzy continues to make progress in her developmental milestones although at a much slower rate than typical children do.

Izzy is a happy girl who loves physical embrace. Every time she sees her brother, she smiles. She pays close attention when Anthony reads books to her and really loves getting hugs from him. Thankfully, Anthony has learned to be very gentle with her.

My kids have helped me tremendously to find my voice and become their voice. Izzy has taught me how to be brave and resilient. Anthony has taught me to be patient and tolerant.

Why do you think it’s important to engage in advocacy?

I think it is time that our policy makers hear from caregivers and our caregiving journeys to understand the reasons behind a need for systemic changes.

Taking this premise, a systemic change is needed where families and caregivers are provided supports and resources to improve the health outcomes of children and adults with medical complexities and/or intellectual disabilities and the quality of life for the entire family. For instance, a whole-family approach should drive the process and procedures of allocating funding and resources. A whole-family approach should include supports for not only parents and caregivers needs but also siblings of a medically fragile child and or adult.

At the system level, an integrated approach that promotes interdisciplinary collaboration amongst providers and entities that provide services to a child and/or adult with medical complexities and/or intellectual disabilities should the goal.

What would you like policymakers to know about your strengths and the value you bring to healthcare decision making?

It is important that policy makers favor policies that promote shared decision-making and enable process that integrates the values and expertise of families and professionals.

The importance of parent’s voice in decision-making is sometimes diminishedby healthcare providers when it comes to goals of care for babies and children with profound medical complexities.

Making policies that foster family and provider teamwork supports family-centered outcomes resulting in higher quality of life for the children and families.

With the knowledge and experience you have now, what words of wisdom would have been helpful for you back when you first started doing caregiver advocacy?

Be open minded and respectful from people’s opinions about your child. Remain calm and remember that you know your child the best. Promote collaboration and discuss your values with the providers. Educate yourself from reputable sources and ask clarifying questions when you disagree or have doubts. Do not be afraid to ask for second and third opinions if you are not convinced about the plan of care for your child. The most important advice I can give new caregivers is to follow your gut, trust your wisdom and remember; do not lose hope, things get better.

What are you hoping to change?

Parents/caregivers should be a part of shared decision-making process. I am hoping to change the approach to plan of care and management of children with intense health care needs and/or developmental disabilities.

Improve the flexibilities and supports for parent caregivers and the entire family of a child with intense health care needs and/or developmental disabilities.

Integration of health and education institutions working together to share information and resources for children with special health care needs.