Advancing Care for Exceptional (ACE) Kids Act – The Martin Family’s Story

Laura Martin is the Director of Parent Communication and Engagement at Graham’s Foundation – a nonprofit that supports families of babies born premature; many go on to have lifelong medical challenges. She is a parent advocate; read about her experiences on her blog, Joseph at Home.

Laura Martin’s son Joseph was born four months before his due date. He is now six and, like many preemies, continues to face complex medical challenges. We had the opportunity to speak with Laura the positive impact the ACE Kids Act would have on her family – and why you should support the Act today.  

Laura and Scott Martin with their children Joseph and Emily, Easter 2016

Laura and Scott Martin with their children Joseph and Emily, Easter 2016

About the ACE Kids Act

The passage of the ACE Kids act is critically important for millions of children, families and communities. This bipartisan legislation is designed to improve care for children with medical complexity on Medicaid while helping to lower costs. Children with medical complexity may see six or more specialists and a dozen or more physicians, often across state borders. The Medicaid system is different in every state – so the families of these children struggle to coordinate the complex, multi-state care of their children.

Why did you initially get involved with Graham’s Foundation?

Our twin boys were born at 24 weeks gestation in the fall of 2009. Our son Campbell passed away after 23 days of life due to complications from prematurity. Joseph spent 228 days in the Neonatal ICU before coming home. At the time of Joseph and Campbell’s birth, I was teaching middle school chorus. Due to Joseph’s multiple health complications as a result of his prematurity, my husband and I made the decision for me to stop teaching in order to care for Joseph.

About six months after I stopped teaching, a position at Graham’s Foundation became available. Working for Graham’s Foundation is the perfect “fit” for our family. It allows me to work from home while also caring for Joseph. It allows me to advocate for those families impacted by prematurity and to provide support to families who are experiencing life in the NICU. I feel extremely fortunate to be a part of the Graham’s Foundation team.

What are Joseph’s medical needs?

During his 32 weeks in the NICU, Joseph spent significant time on an oscillator and ventilator, battled numerous infections, and had multiple blood transfusions.  At five and a half months of age and just two days before he was scheduled to go home, Joseph developed a rare case of late onset Necrotizing Enterocolitis (NEC). Joseph lost two thirds of his small intestine as a result of NEC, which left him with short bowel syndrome. 

As a result of his extreme prematurity and related complications, Joseph’s diagnoses include: Auditory Neuropathy Spectrum Disorder (for which he wears bilateral cochlear implants), hypotonic cerebral palsy, short bowel syndrome, Eosinophilic Esophagitis, vision impairment, Asthma, Bronchopulmonary Dysplasia, and hypothyroidism. Because of the Eosinophilic Esophagitis and short bowel syndrome diagnoses, Joseph has a gastrostomy tube (g-tube) through which he receives the majority of his caloric intake through an amino acid based formula.

What is it like navigating the healthcare system as the parent of a medically complex child? Navigating the healthcare system with a medically complex child can be quite complicated. We have numerous specialists we see, both in state and out of state. Thankfully, we have a primary insurance through my husband’s employer but when it comes to Joseph’s care, there are still many items that are not covered or have strict limitations. Joseph qualifies for a non-income based Medicaid in our state (Katie Beckett Medicaid) which covers almost all of Joseph’s needs that our primary insurance does not cover. However, it does not cover his specialists out of state. His out of state specialists are in-network for our primary insurance, but we are responsible for co-pays and deductibles.

Having the best care for a medically complex child is difficult. For example, we have exhausted almost all of our resources in our state pertaining to short bowel syndrome and Eosinophilic Esophagitis. Two of the leading doctors for these disorders are in a different state but Medicaid will not cover them because they are out of state so we must pay out of pocket in order to make sure our child receives the best care possible for these disorders.

How would the ACE Kids Act impact your family?

As a parent of a medically complex child, the ACE Kids Act is vital to our ability to get him the best care possible. Coordinating Joseph’s care is critical. Because he has two rare disorders as well as many other diagnoses, it is imperative that we find specialists who understand his diagnoses and how they impact each other. Families should be able to travel to any state in order to receive optimal care for their children. Within the last year and a half, we have found it necessary to travel out of state in order for Joseph to receive the best care possible for treatment of his Eosinophilic Esophagitis and short bowel syndrome. This causes a huge financial strain on our family but we will do anything for Joseph to receive the best care. The ACE Kids Act would relieve some of the stress faced by families coordinating care for medically complex kids.

According to the March of Dimes 2015 Premature Report Card, nearly 1 in 10 babies in the US are premature, with disparities by region, race, and ethnicity.  Although not all babies who are premature have medical complexity, preemies represent a significant portion of the population children and families whose medical care and quality of life stand to be improved by the ACE Kids Act. Roughly 3 million children in the United States, or 1 in 25 kids have complex medical conditions. Coordinating care for these children is incredibly time intensive and expensive – and for many families the coordination of care is the sole responsibility of a parent or guardian. Learn more about how the ACE Kids Act will improve care and costs for children and families, and support the ACE Kids Act today