It is estimated that there are 3 million children with complex medical conditions; two million of them on Medicaid. Those children represent only 6% of the children on Medicaid, yet represent 40% of the expenditures. The literature indicates little is known about this population, despite their large impact.
From a national policy point of view, the neglect of this population has a lot to do with states’ rights, each state playing its own pickup game with children’s health policy. Children’s needs become victims of electoral politics driven by party affiliation, divergent ideologies, nationality, race, ethnicity and religion. Personally I wouldn’t be surprised if our national political inertia lasted at least another decade; but it is my belief that states of great diversity, size, and rich in medical assets could lead the way to setting the standards that one day will be national.
As these states venture forward they will prevail if they tackle the fundamental systemic problems of serving this population. One of the greatest systemic problems in medicine today is its proclivity to drift towards what one of my MD colleagues’ calls single event medicine. I just had a hip replacement which I score a PERFECT TEN. However, I care for two granddaughters with complex medical needs: one has a neuro-developmental disorder, of which there are 100 cases reported in the literature, and it is accompanied by intractable epilepsy; the second is short bowel, having lost over 95% of her small bowel and 75% of her large bowel at two days old. Their care takes a multi-state medical team, comfortable with complications not seen before; and comfortable with each other. As near as patients, caregivers and parents can tell medicine is not a team sport especially when it comes to such rare diseases and medically complex cases.
Yet, I look at regional children’s hospitals and I see the potential for networks that can raise the bar for these cases. But I can tell you as grandparent who cares for two children with rare and complex needs we are fed up with single event specialists, especially those who lack talent in the areas of collaboration and communication. We know the cures may not be available that therapeutics and medical interventions may be limited. We see the frustration on the faces of our providers who feel inept because they don’t have all the skills. We also see their frustration when there may be no one to pass the case to and when they do the ball is often dropped. We all sense that it is not just us who are frustrated; it is the practioners as well. And that is the systemic problem for children with complex medical needs representing 40% of the 0-18 Medicaid expenses.
Our need to balance our health care budgets now, does not rest in future solutions; its rests on current team work. To begin this process we need recognize that our regional children’s hospitals are the hub. In my home state of New York the regional children’s hospitals control the overwhelming majority of assets necessary to handle these complex cases. The heart of any initiative begins through the collaborative efforts of these rich and valuable resources. The first state to do this will do a valuable service for the nation’s children.
Why Not New York? The timing is perfect. They are currently initiating a Medicaid Health Home for Children and it could be a national leader.