In the midst of furious showdowns on health care reform at town hall meetings, a moment of peace surfaced in Montana when President Obama drew bipartisan applause after calling a mother heroic. This mother of two had voiced her concern about the Medicaid program she relied on for her child who has multiple chronic conditions. The president reassured her and went on to discuss how our disease-care system does not proactively manage chronic conditions.
Children and young adults with chronic medical conditions and disabilities (CMCD) need proactive management now and for their entire lives. Our health care system fails to serve the young people who need it the most.
Children with CMCD are completely dependent on adults for their health care. Poor health management negatively affects their growth and development, education, and socialization – and drags the entire family down. As the mother of a young adult with CMCD and the founder of a non-profit created because of our experiences with poor quality health care, I cannot understand why this population is not a major focus of health care reform.
One path to start on is to build on successful programs to create a comprehensive system of care. Take a look at the 35% of children with CMCD covered by SCHIP/Medicaid. Medicaid provides a specialized set of comprehensive services known as EPSDT, Early Periodic Screening, Diagnosis, and Treatment Program. The current model of care in favor for chronic conditions is the medical home. First conceptualized by the American Academy of Pediatrics for children with CMCD in the 1960s, the medical home has yet to become the standard of care for children with CMCD in Medicaid. Pairing EPSDT with the medical home would be a step forward in developing a system of care for children covered by Medicaid. Another step is to expand EPSDT and medical homes to cover the remaining publicly covered children with CMCD enrolled in SCHIP.
On the flip side are the other 60% of children with CMCD supposedly fortunate to have private insurance coverage. These children do not have a framework like EPSDT to rely on. Nor do they have medical homes. And a recent study shows that public coverage provides greater financial protection to families than private insurance.
What happens to these children when they grow up? They become young adults with CMCD. The supports and services they relied on as children suddenly disappear, and they enter a new world without any health care guidance or an adult health care system to transition into.
The first problem young adults contend with is obtaining and maintaining insurance coverage. Children with CMCD age out SCHIP and Medicaid between the ages of 18 to 21 years, and even those who meet financial eligibility for re-enrollment in Medicaid lose their protective EPSDT benefits. The private insurance market responsible for insuring the majority of these young adults presents many barriers. Full-time college status is required for family and college-sponsored coverage; so young adults with CMCD who can only commit to part-time cannot avail of this option. Obtaining employer coverage is difficult because young adults typically are low-wage earners and work for companies that do not provide coverage. To compound matters, young adults with CMCD have a tough time finding adult doctors who are willing and able to care for their child-onset conditions. Without insurance and access, one has to wonder how young adults with CMCD can maintain their health.
All parents know that feeling of panic and helplessness when their child falls ill and they have to turn to the health care system. This is just a glimpse of what parents of CMCD continually face. Yes, the mother whom the President met is courageous, and behind her stand another 15 million heroic mothers with fathers and siblings. These families battle systems of care to protect 15 million very precious children and young adults with CMCD.
Children with CMCD cannot vote and they lack an organized lobby. Their parents are consumed with managing ongoing crises. Young adults are bewildered with their newfound status and complex set of responsibilities. Just as we understand that certain populations need special attention because of their increased health care needs, we need to recognize that young people with CMCD have and will continue to have high rates of health care utilization. Fortunately, most people are sensitive and sensible enough to understand the need to support children and young adults with CMCD. Perhaps building health care reform around youngest Americans with CMCD would help design a system to serve the most vulnerable and provide a platform that all parties can work on together.
 Yu H, Dick AW, Szilagyi PG. Med Care. Does public insurance provide better financial protection against rising health care costs for families of children with special health care needs?
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- The 8 Million That Health Care Reform Forgot
- The Art of Advocacy: A Perspective from a Physician-Parent of a Young Adult with a Childhood-Onset Chronic Condition
- Now You See Them…Now You Don’t: Health Care Transitions for Young Adults with Chronic Medical Conditions and Disabilities
- Round Two in the Fight to Cover Children with Pre-Existing Conditions: Cost.
- Health Reform: Tinkering with the Health of Children with Pre-Existing Conditions.
- Got Meds: Drug Adherence for Young People with Chronic Medical Conditions
- The Fate of Children & Young Adults with Chronic Medical Conditions & Disabilities.
- Run for Cover: Young Adults with Chronic Medical Conditions & Disabilities