• Financial & Health Insurance Information for Patients with Congenital Heart Disease


    If you or your child was born with a heart defect (congenital heart disease), paying for treatment will usually involve using different types of resources - whether those resources are private insurance, government programs, or out-of-pocket payments. Complicated medical tests or procedures can be expensive, so it is particularly important that patients who will need treatment and follow-up throughout their lives maintain some form of active medical coverage. It is crucial to avoid gaps in medical coverage during the transition from childhood to adult care. Once insurance coverage is lost, it can lead to long delays in coverage and can be very difficult to get back. Talk to your healthcare providers specifically about how to prevent gaps in coverage.

    Additionally, patients with congenital heart disease may experience periods of disability (depending on the severity of the defect) and require assistance in meeting living expenses. For those who qualify, government assistance may be available.

    Please read on for information about resources that may be available to you to help you meet medical and living expenses. Applying for coverage or assistance can involve lengthy paperwork and documentation of medical conditions. Hospital social workers, financial and health insurance counselors, and appropriate local, state, and federal staff can help you with application processes. One of the advantages of medical centers that specialize in pediatric and adult congenital heart disease is that care team members will typically have the best and most up-to-date information about the changing landscape of health insurance coverage.

    Covering Treatment Costs

    If possible, strive to maintain some form of medical coverage at all times. Breaks in coverage can lead to difficulties in obtaining coverage, waiting periods for coverage of pre-existing conditions, and large out-of-pocket expenses. Make sure any renewals in coverage are dealt with promptly and completely before any expiration dates. Please note that under the Affordable Care Act, health insurance carriers will be prohibited from rejecting applicants on the basis of pre-existing conditions.

    • Private insurance. This form of coverage is what you may think of as traditional health insurance. It is available through an employer-sponsored plan or can be purchased individually. If you are offered options for different plans through an employer, or are applying for private insurance with carriers that have physician networks in your area, be mindful of choosing (when possible) a plan that is accepted by your current physicians and hospital. Visits to “out of network” providers may incur heavy additional expenses. Also, you will want to seek a plan that has the right balance of premiums, deductibles, copayments, and out-of-pocket maximums for you and your family. If you need help determining what this balance might be, your employer’s human resources department, your prospective insurance carrier, a hospital social worker, or a financial planner may be a source of more information or assistance.
    • Medicaid and the Children’s Health Insurance Program (CHIP). Medicaid provides free or low-cost health insurance coverage to individuals and families based on income and other factors. CHIP provides low-cost health insurance coverage to children up to age 19, based on family income. The eligibility rules for each program are established by the individual states. More information about each program is available at the federal Centers for Medicare and Medicaid Services website. This website can help direct you to resources for your state. Your hospital social worker can also assist you in finding out more about Medicaid and CHIP. Even though they sound similar, Medicaid is administered by each state rather than the federal government, unlike Medicare, so the rules can differ depending on where you live.
    • Medicare. This federal program provides health insurance and prescription drug coverage for seniors age 65 and over, some individuals with disabilities, and anyone with end-stage renal disease (permanent kidney failure). More information about Medicare is available at www.medicare.gov, the official Medicare website for the federal Centers for Medicare and Medicaid services.

    Information and counseling for seniors who wish to apply for (or are already using) Medicare and/or other forms of health insurance coverage can be obtained from your State Health Insurance Counseling and Assistance Program (SHIP). An Internet search using terms such as your state’s name and “SHIP insurance” should direct you to your state’s SHIP website. Additionally, your hospital social worker can help you to apply for Medicare or to coordinate your existing benefits.

    • Pre-Existing Condition Insurance Plan (PCIP). PCIP is coverage for patients who:
      • do not currently have any form of health insurance (including private insurance, state high risk pool insurance, and programs such as Medicare and Medicaid); and
      • have been without insurance for at least six months; and
      • have been rejected by another insurance plan due to a pre-existing condition.

    Depending on the state in which you live, a plan may be run by either the state or the U.S. Department of Health and Human Services. Information about PCIP is available at https://www.pcip.gov. Links to information for each state are also available at that website. PCIP is a bridge program of the Affordable Care Act that is intended to help patients with pre-existing conditions obtain health insurance coverage until 2014, when insurance carriers will be prohibited from rejecting applicants based on these conditions.

    • Multiple insurances. If you have health insurance coverage from a variety of sources - such as private insurance, Medicare, and Medicaid—your medical expenses will be covered in an order determined by the types of coverage. For example, if you have private insurance and Medicare, many expenses may be covered by private insurance first, with Medicare paying remaining expenses. Be sure to make your healthcare providers aware of all forms of health insurance coverage you have. Your medical office or hospital’s billing department will submit bills to your insurance carriers in the appropriate order.

    Covering Living Expenses

    • Supplemental Security Income (SSI). This federal program, which is different from Social Security retirement benefits, is designed to help people who are age 65 or older, blind, or disabled and who have limited income or resources to meet basic living expenses such as those for housing, clothing, and food. Children who meet disability requirements are eligible for SSI until the age of 18, at which point they can be reevaluated for SSI eligibility as an adult. Information about SSI is available through the U.S. Social Security Administration (SSA) website at http://www.ssa.gov/pgm/ssi.htm. SSI payments vary by state. Your local Social Security office or a hospital social worker can provide more information. An online search tool to locate your local Social Security office is available at https://secure.ssa.gov/apps6z/FOLO/fo001.jsp.
    • Social Security Disability Insurance (SSDI). This Social Security program delivers disability payments to adults who become disabled after having been in the workforce for a certain amount of time. In some cases, family members such as an adult child with a disability (if the disability occurred before age 22) may also be eligible to receive benefits. Information about SSDI is available through the U.S. Social Security Administration (SSA) website at http://www.ssa.gov/pgm/disability.htm.

    Compassionate Allowances

    Certain diseases and medical conditions are recognized by the U.S. Social Security Administration (SSA) as serious enough to require expedited provision of Social Security benefits. Several congenital heart defects and other cardiovascular conditions are currently on the list of recognized Compassionate Allowances conditions. Information about Compassionate Allowances is available from the SSA website at http://www.socialsecurity.gov/compassionateallowances/. A list of qualifying medical conditions can be accessed at http://www.socialsecurity.gov/compassionateallowances/conditions.htm.

    Questions to Ask Your Doctor About Financial and Health Insurance Information

    The following questions can help you talk to your physician or healthcare team. Print out or write down these questions and take them with you to your appointment. Taking notes can help you remember what you heard when you get home.


    • What information do you need from me (medical records, etc.), and how can I get that information?
    • How do I obtain/keep health insurance?
    • What other professionals may be of benefit to me (health insurance/financial counselors, social workers, mental health counselors, career counselors)?
    • What federal or state programs may be available to help me with medical costs?
    • What federal or state programs may be available to help me with living expenses?

    Note: This website and the information contained, expressed or implied  herein are made available solely for general informational purposes and are not intended to be legal, tax, health, medical or professional advice or the sole source of information about health insurance coverage or specific health plans. While every effort is made to ensure that this information is accurate and current, SCAI makes no guarantees and disclaims any expressed or implied warranty or representation about its accuracy, relevance, timeliness, completeness or appropriateness for a particular purpose.