COPING & HEALING

CARING FOR A CHILD:
FINANCIAL & INSURANCE ASSISTANCE

Financial Assistance

Dealing with medical expenses can be overwhelming in terms of reviewing bills and meeting payments on time. Depending on the severity of the diagnosis, medical costs for cardiac care can be extremely expensive. A very sick child may incur costs related to diagnosis, treatment, specialists, hospitalization, surgical procedures, and follow-up care as well as travel, food and lodging expenses if treatment is at a medical center far away from home. Even with health insurance, some families find it difficult to meet all expenses due to certain policy limits and service restrictions. If you find yourself in this situation and need help paying your child's medical bills, a hospital social worker can recommend a state agency to assist eligible families. The amount of financial aid that can be awarded depends on eligibility guidelines in your state, your financial situation, your insurance policy and the cost of cardiac care.

If your child sees several specialists or has been hospitalized, you may receive a series of bills from different divisions within the same hospital. At times, it can be quite confusing and frustrating trying to decipher what has actually been settled and what is still an outstanding balance. First check with your health insurance provider on whether they have or will directly pay the provider and whether hospital, doctor or lab fees were settled at a lower contracted rate. When reviewing hospital bills, you should always carefully review the itemized statements for errors (i.e. double billing for doctors or procedures). Monthly bills sent by labs or hospitals also may not reflect recent payments or lower contracted rates so it is a good idea to indicate on each bill statement payment made by the insurance and the amount settled out of your pocket.

Health Insurance Coverage

You may be concerned about high health insurance premiums for your child with cardiomyopathy. The easiest way to ensure medical coverage is to include your child in a group health plan provided by your employer. Under such a plan, all family members are covered regardless of pre-existing health problems. Once your child gets older, he/she can either be covered by a university health plan (tied to his/her college) or a future employer. In selecting health insurance plans, you need to understand the pros and cons among the different options: HMO, preferred provider organization (PPO), point of service (POS), and indemnity plans). Factors to consider are 1) premiums and co-payments per medical visit 2) need for a referral to see a specialist, 3) flexibility in negotiating claims, 4) deductible requirements and benefit payout ratio 5) types of specialist services covered and 6) limitations on "in network" versus "out of network" doctors. Children with cardiomyopathy require frequent visits with a specialist such as a pediatric cardiologist so a POP or POS plan is preferable over a HMO. HMO's require referrals for specialist visits that may create delays in getting proper treatment. Also, out of pocket expenses for HMOs may be higher because of more restrictions on coverage.

If insurance coverage is a concern, certain states require private insurance companies doing business within that state to offer open enrollment periods to people with preexisting conditions who may otherwise be uninsurable. Some states also offer comprehensive risk plans to help people with high-risk medical histories. You can check with your state government offices and state insurance commission for more information. The National Association of Insurance Commissioners (NAIC) provides links to each state insurance department's website.

Genetic Testing

Some insurance policies do not cover elective genetic testing. If you feel that genetic testing is medically necessary due to your family history, you can send a letter of reconsideration to your health insurance provider. Or you might want to check your state's legislation on genetic testing and health insurance on what should be legally covered. Another good source of information is the Genetic Alliance. They provide genetic discrimination resources on national healthcare and health insurance information to individuals and families affected by a genetic condition.