To say our health care system is in flux would be timid; a better descriptive term may be tumultuous. During times such as these the medically complex are at risk. No one can be more fragile and at risk than a child who is totally dependent and unable to advocate for themselves. They in turn are totally reliant on their parents and caregiver support system. Yet, in the case of a medically fragile child with extremely complex disorders that frighten even physicians, they find themselves dependent upon parents who are also fragile and dependent. The parent/caregiver is, more often than not is stricken by unrelenting grief that is attendant to the loss of the perfect child; and they are intensely aware that the complexity and chronicity of the child’s condition has forever changed their lives and that they face years or decades of care, or a lifetime of the complex childcare.
They are not alone in this odyssey, doctors and other pediatric providers are facing these pressures:
These pressures are not without their emotional consequences for medical providers; we too often think of our providers as all knowing and invincible and neglect that knowledge has limits, even today. Many of the causative factors of these medically complex disorders are genetic. Here there are no cures; it may take eons to get a diagnosis; and then therapies are few. Often the multi organ involvement requires teams of doctors practicing in a system designed for conditions that existed decades ago, and a system incapable of responding to the complexities we face today. Anyone truly interested in this problem should at least review the stunning clinical variation in this emerging population. Anyone with passing knowledge of this clinical population will concur that a new clinical care model is mandatory for this population.
The Affordable Care Act does contain a provision that was intended to bring attention to this very problem:
Title II, Subtitle I, § 2706 (Pediatric ACO Demonstration Project) The HHS Secretary shall establish a project that authorizes participating states to recognize pediatric providers that meet specified requirements as ACOs for the purpose of receiving incentive payments. The demonstration shall run from January 1, 2012 until December 31, 2016. States will apply to the Secretary in order to be included, although parameters of this application have yet to be determined.
With little or no attention or funding this provision has not fulfilled its goals. However the cause is being pursued. The Children’s Hospital Association has taken up the cause and is pursuing a reform effort. In its efforts at reform it reminds us that this effort can reap fiscal and economic benefits as it is estimated that although these children are only 6% of the Medicaid population they are 40% of the cost.
Here in my home State of New York the Health Homes planning for the pediatric population has just commenced and it provides a unique opportunity to create a truly unique leading edge design for the delivery system to children with medical complexity that could serve not only the Medicaid population but all medically complex children as well. The Health Homes concept already allows for the complexities and service model needs for special populations through tiered reimbursement schedules. It goes without saying that a population representing up to 40% of pediatric Medicaid costs require an accountably model all its own. The only question is where the infrastructure to shoulder that burden is: “who could lead the way, if you will”?
The answer is clear. We need only to acknowledge that the majority of pediatric assets are employed and controlled by the pediatric units of regional hospitals. In upstate New York that would include but not be limited to: Albany Medical Center, Crouse (Syracuse), Upstate Medical Center (Syracuse), Strong (Rochester), Women’s and Children (Buffalo). The next step is up to our State Legislative representatives and policy makers in the NYS Department of Health to take the lead and build the systems that unite these and other major pediatric resources. New York State could be the first in the nation to design such a system.
And there is no better use of the $8.0 billion waiver funds: On April 14, 2014 Governor Andrew M. Cuomo announced that New York has finalized terms and conditions with the federal government for a groundbreaking waiver that will allow the state to reinvest $8 billion in federal savings generated by Medicaid Redesign Team (MRT) reforms.