This model ensures collaboration among the family, community providers and the hospital.
By Lexi Graham and Gillian Ray
Kenneth and Chloe at Family Advocacy Day in Washington, D.C., in June.
Kenneth, Chloe and Cara Allen were born at 25 weeks and with medical complexities related to their premature birth. Weighing just over one pound each, the triplets spent hundreds of days in the neonatal intensive care unit (NICU) at Arkansas Children's Hospital where a team of nurses and subspecialists cared for them.
Candyce and Greg, parents of the Allen triplets, recall the compassionate support staff members extended to them, especially when Cara's health failed to improve and she passed away. “The attention on Kenneth and Chloe during those dark days allowed us to spend the time we needed to say goodbye to Cara, and that meant so much to us.”
Kenneth and Chloe, now 8, have made significant health strides thanks to Arkansas Children's and neonatologist Robert Lyle, M.D., who oversees the care they receive through the hospital's Medical Home Clinic. Kenneth and Chloe see 20 subspecialists and 11 therapists. Key to coordination is communication between the Medical Home Clinic, the family and the broader care team of subspecialists and therapists.
Additionally, 24/7 access to a member of the care team ensures Candyce and Greg feel supported in advance of scheduled appointments, as well as when a health crisis strikes and the family must seek care in the emergency department (ED). On those rare occasions, Candyce calls the care team before arriving at the ED knowing it will expedite registration. Today, Kenneth and Chloe enjoy a quality of life that would have been impossible without Lyle's support and the Medical Home Clinic at Arkansas Children's.
While there are a handful of medical home-type programs for children with medical complexity in other states, this model ensures collaboration among the family, community providers and the hospital for children with medically complex conditions regardless of geography.
That's why children's hospitals are advocating passage of the ACE Kids Act of 2015, a federal bipartisan bill that would create coordinated networks of pediatric providers to improve care for children with medical complexity in the Medicaid program while reducing costs. These networks would ensure continuity of care and services critical to this population.
In 2011, a team at Arkansas Children's Hospital Research Institute and the University of Arkansas for Medical Sciences studied the Medical Home Clinic and found the clinic saved nearly $1,200 per patient per month for the year after a patient's initial clinic visit.
Based partially on this study, as well as others that looked at cost savings associated with medical homes, CHA estimates the ACE Kids Act would reduce Medicaid spending on this population of children by $13 billion over 10 years. While the ACE Kids Act would be an optional program for states as well as families, the more states and families that opt in, the greater the savings.
Today there are about 3 million children in the country with complex medical conditions, two-thirds of them rely on Medicaid for health coverage. The needs of these children are so medically complex that they often have to cross state lines to access care. Because Medicaid operates differently in each state, families of children with medical complexity face challenges and red tape when seeking care.
Often the burden is so considerable that parents reduce work hours or quit their jobs to care for their children. And without national standards of care for these children or shareable data across states, large-scale quality improvement and spread is out of reach.
While Chloe and Kenneth are receiving quality care from Arkansas Children's Medical Home Clinic, they and other children could be benefiting from the acceleration of care improvement that is expected once the ACE Kids Act is implemented. The ACE Kids Act would enable data sharing across states to advance best practices and national standards of care much like Medicare does for its beneficiaries.
Furthermore, the bill advances the development of risk-based payment models that would provide predictable costs and flexibility to providers to use the most effective care setting. A national approach to pediatric care designed specifically for children like Chloe and Kenneth is within our reach. They and the millions of other children with complex medical conditions deserve no less.
Learn more about the ACE Kids Act.