The federal expansion of a 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 – formerly known as the State Health Insurance Program (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 Parish’s 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 children’s health insurance program materially influences the supports a family receives.”
Parish’s findings were published in the journal “Children and Youth Services Review,” in January – just weeks before President Obama signed the Children’s Health Insurance Program Reauthorization Act (CHIP). The act renewed the formerly identified “SCHIP” program and expanded its coverage to include up to 11 million children.
The program was originally created in 1997 to help families who cannot afford private insurance but also 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.
Under the 2009 reauthorization act, local and federal dollars still pay for the insurance program, and states still decide how each works, including how much families can earn before their children are ineligible.
According to Parish’s study, which examined data for nearly 39,000 children from the 2002 National Survey of Children with Special Health Care Needs, some states have been more generous than others.
In Tennessee and Arkansas, for example, children were ineligible for state health insurance if their family’s household income exceeded the poverty level or $21,200 for a family of four. In New Jersey, however, a child qualified as long as their family’s income wasn’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 $35,200 for a family of three.
Furthermore, some states have spent 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,” Parish said.
The UNC assistant professor 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.
Study co-authors are Roderick Rose, a research associate at the UNC School of Social Work; Megan Andrews, clinical case manager at Raleigh’s WakeMed Rehab; and Paul Shattuck, Ph.D, an assistant professor at the George Warren Brown School of Social Work at Washington University in St. Louis, Mo.
By Susan White