The final point on the U.S. joint pediatric and adult consensus statement was to ensure health insurance for all young people with SHCN. The health care provider should encourage the young person with rheumatic disease and his/her family to review, understand, and plan for the young person's future health insurance options. This is a particular problem for the United States and in a recent study the majority of young adults with disabilities reported gaps in insurance coverage, and many were uninsured for a substantial portion of the three-year study (64). Health insurance options in the United States center on public and private insurance options.
Data from the U.S. Census Bureau indicate that people with disabilities are more likely to have public health insurance and less likely to have private coverage than people who do not have disabilities. Among adults with disabilities aged 22 to 44 years, 22% have public insurance, almost 20% are uninsured, and 58% are privately insured. In contrast, in the same age group of nondisabled adults, 3% have public insurance, 17% are uninsured, and 80% are privately insured (65). There are a few ways in which young people with special health care needs can qualify for Medicaid when they transition to adulthood. As noted previously, young people who maintain SSI benefits on redetermination automatically qualify for Medicaid in most states. Second, some individuals who do not meet adult SSI eligibility criteria can continue to receive Medicaid as long as they are enrolled in an approved vocational rehabilitation program. Finally, some individuals who did not qualify for SSI as children due to family income may become income-eligible to receive SSI and Medicaid as an adult, single head-of-household. Young people with SHCN who are privately insured under family plans automatically lose coverage at age 19 years unless families pursue one of two available options to continue benefits. The most common option for maintaining coverage under a family insurance plan is to qualify for student status, which typically requires young people who attend college to maintain full-time schedules. Student coverage under most family plans is not available beyond ages 22 to 24 years. A second and usually not needed option for young people with rheumatic disease is that they be declared "dependent for life." This qualifies them for continued coverage as long as they have no gainful employment and meet annual recertification procedures for disability and dependent status. Young people who obtain private health insurance independently (young adult pays premium) have a variety of options, depending upon their particular circumstance: college student plans, group employments plans, Consolidated Omnibus Budget Reconciliation Act coverage if temporarily unemployed, Ticket-to-Work, and self-payment (66). The Health Insurance Portability and Accountability Act of 1996 helps to assure full coverage under private insurance plans by permitting young people with disabilities to purchase individual coverage when group coverage is terminated, regardless of preexisting conditions (65).
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