CHAPEL HILL – The proposed federal expansion of the State Children's Health Insurance Program should help improve disabled children's access to services, but more needs to be done at the state level to meet their needs, according to a new study from the University of North Carolina at Chapel Hill.
Susan Parish, an assistant professor at the UNC School of Social Work and the study's lead author, found that families raising children with disabilities are particularly struggling to get services in states where qualifications for the public health insurance program – widely known as "SCHIP" – are less generous, meaning that they earn too much to qualify for the insurance program based on their state's income limits.
According to the research, this includes families whose household income is less than three times the poverty level.
Others less likely to receive needed support services include parents who speak limited English, children who are uninsured and children with severe impairments.
Nationwide, some 12 million children have special health care needs, said Parish, who has conducted extensive research on children with disabilities and their families.
"The evidence is compelling and overwhelmingly confirms the need to expand and strengthen health insurance coverage for children with disabilities and their families," she said. "Without assistance, families face high out-of-pocket costs. The tangible support provided by the SCHIP program materially influences the supports a family receives."
The findings coincide with moves by Congress to approve a bill that would add more than $30 billion over almost five years to the public health insurance program. If the measure is approved and signed into law by President Obama, coverage would expand to more than 10 million children, including many with disabilities who are now ineligible.
However, what isn't clear is how the proposed SCHIP expansion would affect each state-run health insurance program, Parish said. Local and federal dollars pay for the programs, and states decide how each works, including how much families can earn before their children are ineligible.
Some states are more generous than others, Parish noted. In Tennessee and Arkansas, for example, children are ineligible for state health insurance if their family's household income exceeds the poverty level or $21,200 for a family of four. In New Jersey, however, a child qualifies as long as their family's income isn't more than three- and-a-half times the poverty level or $74,200. In North Carolina, the eligibility rate is 200 percent of the poverty level or about $42,400 for a family of four.
Furthermore, some states spend more local dollars to ensure that a broader group of children are covered.
"The bottom line is we need some form of affordable health insurance for all children, regardless of their disabilities, which would go a long way toward solving these problems," said Parish.
The study, published this month in the journal "Children and Youth Services Review," examined data for nearly 39,000 children from the 2002 National Survey of Children with Special Health Care Needs.
Parish said there is an even greater need to improve access to services for children with disabilities because many of their families already face severe financial hardships. She released a study late last year that found that families across all income levels who are raising disabled children are significantly more challenged by food, housing and health issues compared to families without disabled children.
Parish added that families in states with more generous subsidies and eligibility requirements are more likely to have better access to a professional care coordinator – a vital resource, she said, for finding needed services, providing resource referrals and advocating for children with disabilities.
"This care coordinator is really seen as the linchpin to whether a child gets everything he or she needs," she said.
SCHIP, which was created in 1997, covers about six million children whose families cannot afford private insurance but earn too much to qualify for Medicaid. In 2007, Congress passed bipartisan bills that would have expanded the program's funding by $35 billion over five years, but President Bush vetoed the legislation twice.