Last year, Time magazine published an article titled “Saving Preemies." It discussed the medical miracles of neonatal intensive-care units and offered valuable insights into the professional staffing requirements, survival rates and risks in striving for higher survival rates. It also touched on lifelong disabilities and the tremendous cost of care for these patients.
Surviving preemies are entering a world that requires educational, medical, social and economic resources—often obtained from local, state and federal sources. As science and technology improve NICU care, government and other stakeholders should plan with critical thought for the lifetime requirements and responsibilities resulting from these miraculous outcomes.
With 20 years of coordinating care for special-needs populations, the HSC Health Care System has vast experience with these challenges. We know that a severely, chronically ill child can be 15 times more expensive than TANF (temporary aid to needy families) beneficiaries. Our members, many of whom began their life in NICUs, can cost up to $50,000 a year for their total care needs. And coordinating the growing multiple needs of children and youth with special healthcare needs is a long-term challenge, especially in low-income communities in which families often ill-prepared to manage complex responsibilities.
The past several years, a number of researchers have concluded that the concentration and complexity of children with special healthcare needs in urban communities and the disparities in rates and conditions between low-income black and Hispanic children versus white children are significant. Researchers have also established that 15% to 20% of families living below the federal poverty level in most urban communities are one-third more likely to have a child with special healthcare needs.
These children represent complicated societal challenges, which require significant social, psychological and transition support to achieve good medical outcomes. If properly supported, young adults with disabilities can thrive in their communities. If not, they can represent future economic and social burdens as government dependents.
Governments must consider the big picture and long-term consequences as they plan future resource allocation—particularly as the population of children with complex medical conditions who rely on Medicaid continues to outpace pediatric population growth overall. More precise estimates of this future population at risk, effective care coordination management models and realistic financing are essential.
Thomas W. Chapman is president and CEO of the HSC Health Care System, a not-for-profit healthcare organization committed to serving families with complex healthcare needs and eliminating barriers to health services.