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Title V programs are federally supported safety nets for children with chronic diseases. However, using the example of children with diabetes mellitus, Title V program eligibility and scope of coverage vary by state and may result in health coverage gaps for high risk patients.
In the current economic environment, the proportion of children receiving medical coverage from public programs is increasing. One particular public program for children with chronic diseases is the Children with Special Health Care Needs (CSHCN) program, funded through Title V of the Social Security Act of 1935, which provides federal support and serves as a safety net. However, states administer Title V programs individually defining their own medical and financial criteria for eligibility, which could lead to geographic disparities in access to coverage, medical care, and medications. As a paradigm for understanding this safety net for children with chronic diseases, our objective was to evaluate variation across states regarding eligibility and levels of coverage provided by Title V programs for children with diabetes, which is of particular interest given the increasing burden of both type 1 and type 2 diabetes in the US and their associated health care costs.
We developed a telephone survey for program directors of all Title V programs (50 US states and Washington D.C.), which inquired about eligibility of children with diabetes, and whether programs provided coordination of care and/or medical coverage. For programs that provided medical coverage, we inquired about coverage of medications, diabetic supplies, medical visits, ancillary support and transportation to appointments. We assessed requirements for maintaining eligibility based on income and age, and inquired about cost participation and caps in coverage. Interviews were transcribed, analyzed, and coded. Finally, we compared state-specific financial eligibility for Title V Programs with financial requirements for State Children’s Health Insurance Program (SCHIP) and Medicaid programs using published data from Parish et al. Differences between states’ care provision were compared using simple proportions and frequencies. This study was classified as exempt by the University of Michigan Ethics Board.
Our response rate was one hundred percent. Children with diabetes were eligible for Title V programs in 32 states (63%). For most states, both type 1 and type 2 diabetes were covered, with the exception of Arkansas and Wyoming, which limited coverage to children on insulin.
All 32 states provided coordination of care and referral systems for children with diabetes. Twenty-six states (51%) provided medical coverage and coordination of care for children with diabetes. The Table provides a state-to-state comparison of medical coverage. All 26 states covered visits with a medical provider and insulin, and 24 also covered diabetes supplies (eg, glucometer strips, syringes.).
Eligibility for all programs that covered medical care was based on the family’s relationship to the federal poverty limit (FPL), ranging anywhere from 185% to 300%, with 10 programs having higher FPL limits for eligibility than SCHIP or Medicaid. Most states (n=18) covered children until 21 years of age. Finally, some states (n=9, 17.6%) required cost participation on the part of families, and 9 states also capped coverage.
Similar to other chronic pediatric diseases, management of childhood diabetes requires access to insurance for medications, supplies, and visits to providers to prevent long-term complications. Children without access to private health coverage may turn to public programs for their medical coverage. Medicaid provides coverage for the most disadvantaged of children and SCHIP for children who have modest incomes but who do not qualify for Medicaid. Title V programs are unique because they designate eligibility based diagnosis of a chronic disease. Although Title V programs have financial eligibility requirements, in at least 10 states, these income limits were more generous compared with Medicaid or SCHIP.
Title V programs may serve as the insurer of last resort or provide secondary coverage for children with private or public insurance, particularly in cases where children are underinsured. For example, children with diabetes or other chronic diseases may be insured through private plans or SCHIP, but even with this insurance, families may have significant out of pocket costs and therefore enroll in Title V programs to gain more comprehensive coverage.
Surprisingly, only about half of Title V programs in the US provide medical coverage for children with diabetes. Nonetheless, this coverage was relatively comprehensive, and the majority of programs pay for the essential elements of diabetes care. Coverage until 21 years of age in most states is critical for children who at 19 years of age would transition off of Medicaid or SCHIP in the majority of states. Given recent health care reform which mandated private insurers extend parental coverage of children through 26 years of age, this may lessen the burden on Title V programs.
State-to-state variability in coverage is not limited to Title V programs, as the American Academy of Pediatrics recently reported geographic disparities in coverage for children in private plans as well. These differences could impact levels of coverage provided under the Affordable Care Act, as states have been given latitude to choose from either public or private plans for establishing a benchmark for coverage. The AAP has therefore recommended that a benchmark be established by the federal government to ensure uniformity of health benefits for children across states.
There were limitations to our study. The interviews were conducted in 2006–2007, prior to SCHIP reauthorization. Therefore, there may have been changes in eligibility for programs since that time. In addition, this study did not explore the presence of waiting periods, enrollment caps, or other administrative rules that could limit children’s access to Title V programs. Finally patterns of coverage may differ by disease type.
In conclusion, there was significant state-to-state variability in Title V medical coverage across all US states. Similar to children with diabetes, it is likely that other children potentially face gaps in health coverage in states that do not cover their condition or provide comprehensive medical coverage. This results in a patchwork safety net for children with chronic disease that may have an impact on future health outcomes.
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The authors declare no conflicts of interest.