It is gratifying that the first stated Principal is Care Coordination. My focus is the care of children with rare and/or medically complex disorders. In reviewing the draft and its principles I do not see any reference to the pediatric population that is in search of its diagnosis for their rare disorders. There are estimated to be 30 mil Americans afflicted by rare disorders, the majority children, who search for a diagnosis for years (7.5yrs-recent Shire Drug Report). These diseases are complex in themselves since 80% are genetic and the majority lack cures and therapies.
When they are finally diagnosed they join the ranks of the long term chronic and complex population, often for life. A recent Children’s Hospital Association Study asserts that 6% of the children on Medicaid represent 40% of the cost. The 6% represent the population in CRG 5b-9 (Clinical Risk Groups). The definitions for CRG 5b-9 reveals that fulfilling the State’s vision of family primacy in care coordination will require some major cultural changes in the continuum of community care. To serve this population will require an acknowledgment that the network MUST incorporate the State’s top children’s hospitals. It is not surprising that clinicians, case managers, and other supportive services that attempt to support families and children in their home, find relationships with these large complex institutions daunting at best. They are, more often than not excellent at trauma and acute care; however prior to admission they seldom have been part of the continuum of care and therefore in many ways ill prepared to join the proposed High Fidelity Wraparound Care Team. It would be rare to have the ambulatory outpatient team integrated into the inpatient team. The isolation of inpatient creates an environment that severely impedes the care continuum at three levels: one, the admission lacks the critical input of the outpatient team; two the child and family witness the brunt of this neglect and feel isolated from the child’s care, as they are customarily only passive witnesses at bedside; and third, the discharge process imposes further trauma, when the enormous assets of the team present at the bedside, evaporates. It is as if the most critical link in the continuum of care is available for only one time single events, after which lines are cut. The very definitions of CRG 5b-9 are testimony to the seriousness of this gap.
- Chronic & Complex (CRG Statuses 5b and 6) – Child with complex conditions that requires pediatric sub-specialty multidisciplinary care for greater than one year. These patients receive the majority of their care at a tertiary children’s hospital and frequently require diagnostic and therapeutic medical and/or surgical procedures. These patients require a guided transition to the adult health care world for surveillance and management of complications.
- Critical (CRG Statuses 7, 8, and 9) – Child requiring intensive, multidisciplinary care for >3 years, that enters the health system with a life-threatening or progressive condition. These patients require ICU care and ongoing procedural and sub-specialty care at a tertiary children’s hospital. These children require a guided transition to the adult health care world due to ongoing, lifelong medical conditions.
Parents, such as me rely on these hospitals to stabilize our children at their baseline level and treat them when they diverge from it. We struggle along with our outpatient support structure to maintain that baseline. We need an infrastructure that marries the community support structure with the care teams of the large hospitals. Their current relationship is thin at best and antagonistic at worse.
This NYS Health Home Initiative for the Pediatric population has a truly unique opportunity. By recognizing that this small population as a major driver of cost and a population that is extremely diverse it can widen the boundaries of care coordination to include all pediatric care assets in the State. Consider that in any region the local children’s hospital own the VAST majority of assets to serve the CRG 5b-9 population. The PICU and NICU beds are not at the pediatricians office or community clinic, nor are the pediatric sub-specialists likely to work anyplace other than the children’s hospital.
Reforming Medicaid for medically complex children was addressed in an April 2013 article in Pediatrics. It could provide a guide for creating a network of our university based pediatric hospitals. This initiative could be basis of a partnership to address some of the problems these hospitals face:
Children’s hospitals play a central role in our child health care system. These hospitals face unique challenges under health care reform. They care for children with the most complex medical problems but often are not reimbursed for good preventive care, care coordination, or quality.
This partnership could also utilize NYS’s ACO legislation to link these hospitals in service to this population and thereby create a national model.