Health Insurance & Down Syndrome

Down syndrome received its name from John Langdon Down, a physician who first described it in 1866. The syndrome is genetic disorder in which the DNA has an extra copy of the 21st chromosome.

The Federal Health Insurance Portability and Accountability Act, otherwise known as HIPAA, prevents insurance companies from denying coverage to a person with Down syndrome. The law applies to group health insurance plans.

For those who are self-employed and are not part of a group plan, coverage depends on state law. Although a majority of the states have passed laws banning denial of health care coverage for genetic disorders, some states allow denials in certain circumstances.

Health insurance for individuals with Down syndrome is available through Medicare and Medicaid if the family qualifies. Medicare qualification depends on the family’s income.

State-administered Medicaid waivers can qualify an individual with Down syndrome for some health care coverage. States vary in how they qualify and administer their insurance benefits.

The National Down Syndrome Congress advocates for health insurance coverage for those with Down Syndrome. The organization's position paper cites the need for affordability, portability and universal access for individuals and for families experiencing the financial pressures of caring for those with the disorder.