Children’s Special Health Care Needs Can Bankrupt Families – Say Ahhh! A Children’s Health Policy Blog


Meg Comeau, Project Director for the Catalyst Center, Boston University School of Public Health

As policymakers consider health reform, they will need to consider the needs of families raising children with special health care needs.  These families are not only hit hard in the pocketbook, they face overwhelming bureaucratic obstacles to coverage.  We asked Meg Comeau to address this issue from a policy perspective and from her personal experience raising a daughter with special health care needs.

“Promises are like babies:  easy to make, hard to deliver.”  – Author Unknown

In my wallet, I have a small piece of white plastic with my name on it under the logo of a well-known health insurance company.  To me, this insurance card represents a promise, so to speak, that if I need access to the high-tech world of modern-day health care services I can get it.  In their wallets, my husband and daughter each have a similar card with their names on it.  For a small co-pay and with reasonable deductibles, we can see a doctor or get a prescription filled whenever it’s necessary.  The promise that we can get what we need is for the most part fulfilled and we know we are very fortunate in this.

But for one of us, that small white card is not enough.  Equally important to us all is the little blue card that also sits in my daughter, Sarah’s wallet.  This card displays the logo of the Massachusetts Medicaid program.  Sarah was born with a complex genetic disorder that has seriously impacted her physical, developmental and behavioral health.  She requires many primary and specialty care doctor visits every month, an average of 6 prescription medications per day, habilitative physical, speech, and occupational therapies, medical equipment and supplies such as oxygen and more.  Without the supplemental coverage she receives through Massachusetts Medicaid, the small co-pays and reasonable deductibles our primary insurance requires would have overwhelmed our middle-income family long ago.

Everyone who is interested in the health and well-being of children and families can agree that access to insurance coverage is fundamentally important.  But from my viewpoint, as both Sarah’s mother and the director of the Catalyst Center, a health care financing policy research and technical assistance group funded by a grant from the Maternal and Child Health Bureau, the depth and affordability of that coverage is equally important and must also be kept at the center of health care reform efforts.  

Because the current system is designed to address acute episodes rather than chronic or long-term health issues, many families just like mine raising children with special health care needs are financially overwhelmed – the promise represented by their little plastic card has been broken.  According to the National Survey of Children with Special Health Care Needs, approximately 96% of children with chronic illnesses and disabilities have either private or public health insurance.  But the survey also tells us that 20% of families of children with special health care needs spend more than $1,000 out-of-pocket per year on their care and that 18.1% of families report that their child’s condition has caused them financial problems.  This is direct evidence that just having access to coverage is not enough.  The Catalyst Center has recently released a publication which explores and expands on the causes and consequences of this entitled “Breaking the Link between Special Health Care Needs and Financial Hardship“.  Through our work, we have identified three pathways to serious hardship, including:

  • Higher health care costs (co-pays, deductibles, uncovered expenses, limits in coverage, caps on coverage)
  • Higher costs for expenses every family has (child care, electricity, transportation, food/shelter/clothing)
  • Loss of employment income and access to private insurance (the majority of care for children with special health care needs is provided by families, resulting in fewer opportunities to work)

Some currently circulating health reform proposals contain elements that will offer protections to families.  Key elements include guaranteed issue; exclusions for pre-existing policies; limits on out-of-pocket expenditures; prohibitions against lifetime benefit caps; sliding premium scales to promote affordability; use of the medical home model; and coverage for flexible benefits and care provided at home. With mechanisms such as these in place, all three pathways to financial hardship can be circumvented, and family financial security protected.  Effective reform strategies must go beyond providing simple coverage for all Americans.  Meaningful reform must encompass universal access to comprehensive coverage, an adequate range and depth of health benefits, and flexible financing for family supports. In the past week or so, we’ve begun to realize just how difficult delivering on the promise of health care reform will be. Let’s keep in mind, as we move forward with this complicated but necessary work, that what ends up behind those little plastic cards represents a promise that must be kept not just to ourselves but to our children, particularly the most vulnerable.

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