Medical System Fails Children with Complex Health Needs
TL/DR –
Children with medical complexity, defined by the American Academy of Pediatrics as those with multiple significant health conditions that affect more than two organ systems, require extensive medical care and caregiver dependency. Despite the significant financial and psychological stress they present, data shows that home care offers a higher quality of life for these children and their families, and reduces healthcare spending. However, the Covid-19 pandemic has highlighted the precarious balance of home healthcare for these children, with shortages of medication, medical supplies, and home health nursing, suggesting a need for policy changes and increased funding to support families of children with medical complexity.
Pediatric Care for Children with Medical Complexity Home Care Issues
Many families anticipate taking a newborn home just after delivery. However, pediatric care providers often cater to babies who do not fit into these typical scenarios. Many patients spend the first couple of years of their lives in the hospital due to severe diseases or premature births. These infants eventually leave the hospital equipped with necessary life-sustaining gadgets like ventilators, oxygen tanks, suction machines, tracheostomies, feeding tubes and pumps. Alongside managing these devices, caregivers must navigate the maze of ongoing medical care coordination.
Navigating the U.S. Health Care System
Once they leave the hospital, caregivers and their children confront challenges within the complicated U.S. health care system. The American Academy of Pediatrics describes children with medical complexity as those with severe health conditions that affect multiple organ systems, require substantial medical care, depend on life-sustaining medical technology, and require significant health care resources post-discharge. These children often need frequent pediatric specialty visits, multiple therapies, and home nursing care. Unfortunately, insurance coverage issues may prevent families from receiving the appropriate home nursing and support they need.
Impact on Families and Health Care Costs
Caring for children with medical complexity results in considerable financial, psychological, and social stress for families. Despite these challenges, data shows that home care significantly enhances the quality of life for both children and families and reduces health care costs. In 2014, children with medical complexity, who represent less than 10% of Medicaid enrollees under 21 and less than 1% of U.S. children, accounted for 40% of total Medicaid pediatric spending.
COVID-19 Impact and the Need for Support
The COVID-19 pandemic has intensified these challenges. Shortages of medication and medical supplies impacted care in and out of the hospital. Home health nursing became scarcer, with all 50 states reporting shortages in direct care workers in 2022, leading to widespread disruption of service to children with medical complexity. The pandemic has heightened the frequency, length, and use of acute care resources for medically complex children. We need to do more to support them.
Policy Changes for Improved Care
The expansion of outpatient services to this population is crucial. Virtual visits should be more accessible and widespread. Insurance coverage must improve to ensure safe home care for children with medical complexity. Relevant quality measures should be implemented to improve home health support and prevent repeat hospitalizations. National and state policies should ensure adequate health care coverage for children with medical complexity and limit out-of-pocket costs. Unfortunately, with the pandemic declared “over,” even existing coverage and policies are at risk. It’s vital to increase funding to programs like the Medically Dependent Children Program. Children with medical complexity face the greatest uphill battles and deserve every chance to reach their full potential.
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