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How The ACA is Helping Children with Special Needs and Their Families

Sep 27, 2016

The Affordable Care Act (ACA) has helped both children with disabilities and their parents.  Two reports from the Urban Institute (see Resources) highlight how two generations are benefiting from healthcare coverage under the ACA.

How Health Care Coverage is Maximized

The Urban Institute report cited a number of problems faced by families without insurance. “For instance, in September 2015 nearly 6 in 10 uninsured parents …reported that their family often or sometimes ran out of food in the previous 12 months… In addition, 45.0 percent of uninsured parents reported that they often or sometimes were unable to pay the rent, mortgage, or other housing costs; 69.3 percent had problems with unexpected bills, such as car repairs or home repairs; and 44.7 percent were unable to make the minimum payment on a credit card bill or loan.

Research shows that when parents have coverage, their children will too.*  One of the Urban Institute reports stated that “… just 1.7 percent of insured parents reported that their child is uninsured… In contrast, 25.2 percent of uninsured parents reported that their child is uninsured.”  Medicaid expansion data showed that uninsured parents were three times as likely as insured parents to have children who were eligible for Medicaid yet were uninsured.  Making sure parents have health insurance also helps retention for children’s coverage, resulting in continuity of care. 

Data presented at the NJ Hospital Association showed that uninsured children and adults were diagnosed on average two to four years after their peers who had insurance coverage.  This results in increased morbidity and mortality, since conditions are more severe and costly when there is a delay in diagnosis.  Uninsured children and adults are less likely to access preventive services as well, which are now provided at no cost for families under the ACA.  These services include but are not limited to:

  • developmental screening
  • depression screening
  • newborn hearing screening
  • vision screening
  • immunizations
  • lead screening for at risk children
  • obesity screening
  • special services for women regarding pregnancy, mammograms, cancer screenings, etc.

What Gains Have Been Made under The ACA for Families?

The Urban Institute reports indicate that there has been a decrease of 36% in uninsured parents since enactment of the ACA, and noted that “the share of parents with health insurance increased 6.4 percentage points and the share of children with coverage increased 1.7 percentage points – a historic high for families.” Notably there were “large declines [in uninsurance rates] among low-income and Hispanic parents and a narrowing of the difference in uninsurance rates between parents and children through early 2015.”   
Families with insurance reported better access to care than those without insurance, which means families didn’t go without care or struggle as much with medical expenses.  Parents were more satisfied with the newer health plans and thought they could get care when their child needed it, which is especially important for children with special health care needs.  One of the Urban Institute reports noted that these gains have been made even though “Children were not the primary target of the ACA’s coverage provisions given that they have had substantially lower uninsurance rates than parents and other adults.”

Remaining Barriers

Although there have been improvements in coverage for both children and their parents -- 96.4% of children and 89.6% of parents have health insurance – there are still many children and families who are eligible for health care coverage but remain uninsured.  The Urban Institute found that most common reason for this is concern about affordability.  Some families may not be aware of the subsidies available to help pay premiums.  Others have incomes too high for Medicaid but not high enough (100 percent of the federal poverty level) to get those subsidies (known as the “assistance gap”).  Other individuals are ineligible for premium subsidies or Medicaid due to immigration status.  And parents who are ineligible due to immigration status may not realize that their children may be eligible for Medicaid or premium subsidies.  Lastly, one third of uninsured families are in states that chose not to expand Medicaid.  Affordability could be addressed either by Medicaid expansion and/or increased financial assistance in the Marketplace.

In sum, there have been improvements in coverage for both children with special needs and their parents.  However, there are still obstacles to coverage for some families, such as affordability, ineligibility due to immigration status, and failure of states to expand Medicaid.  Additionally, there are some children and families that may not be aware that they are eligible so remain unenrolled.  Overall however, the latest data indicates that there has been increased enrollment and access to care including preventive care, which will most importantly result in better health outcomes for children with disabilities and their families.



Urban Institute:

Georgetown University Health Policy Institute


Lauren Agoratus


Lauren Agoratus is the parent of a child with multiple disabilities who serves as the NJ Coordinator for Family Voices. She also serves as the southern coordinator in her state’s Family-to-Family Health Information Center.

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