Since healthcare in the U.S. is so expensive, most parents are understandably worried about how to pay the medical costs for something as serious as CHD.

When you are busy learning about the diagnosis, the idea of talking with your health insurance at the same time may be overwhelming. However, it’s critical that you find out what your insurance will pay and what costs will be your responsibility.

Concerns about money may or may not initially seem as important as concerns about your child’s well-being, but the cost of healthcare is a practical and real issue that families should deal with as soon as possible. Waiting to find out about your costs will only add to your stress.

You can start by getting some basic information about your health insurance. As you learn more about the care your child will require and where they will get treatment, you can get an estimate of what you can expect to pay. Your physician or hospital may have financial counselors or others who can help advise you through this process.

Know the Basic Categories of Costs

While each healthcare plan in the U.S. has different rules, many plans require you to pay specific costs in addition to your premium (the amount you and/or your employer pay monthly). These costs apply any time you get medical care – like when you see a physician, have a test, or buy medicine. Take time to find out what these common costs are for your insurance plan.

Annual Deductible

This is the yearly amount you pay in medical costs before the insurance company starts paying its share of covered expenses. If the deductible is $5,000, then you are responsible for paying the first $5,000 in healthcare you receive each year. After that, the insurance company is responsible for the cost of care.

Copayment or “Copay”

This is the amount you pay each time you receive care – when there is a copay. For example, you may pay a $30 or $75 copay for a physician’s visit, and after that the insurance company pays the rest of the charges for that visit. Copays are often higher for a specialist than a general practitioner.


This is a percentage of the cost of medical care that you pay for. For example, if you have a 20% coinsurance for a test that costs $1,000, you pay $200. Your insurance company pays the other 80% or $800. Coinsurance is a different expense than a copay.

Annual Out-of-Pocket Maximum

This is the largest amount of money you are responsible to pay for covered expenses in a year. It is the total of your deductible, copays, and coinsurance – but this amount does not include your premiums (the monthly fee you pay to have insurance). Once you reach this limit, the insurance company will pay 100% of your covered costs for the remainder of the plan year. The insurance company will not pay for care that is not covered by your insurance plan even after you reach the out-of-pocket maximum.

Understand Your Insurance Coverage

  • 1. Learn about your provider network

    Review your insurance policy to understand the difference between in-network and out-of-network coverage. Insurance companies partner with certain hospitals, physicians, laboratories, and pharmacies. These preferred providers are referred to as “in-network.” When you receive care in-network, your insurance typically pays more of the costs than it does for care out of their preferred network.

  • 2. Learn what your policy covers

    Review your insurance policy to understand what services and procedures are covered expenses, which means the insurance will pay either all of the costs or part of the costs. Most insurance companies have a list of services and procedures that are not covered under your plan. It is rare, but there may be times when some recommended CHD care is not covered even with an in-network provider.

  • 3. Get approval from your insurance company

    Once you decide where you or your child plan to get care, the next step is to make sure that your insurance will authorize (agree to pay for) the services there. Your primary physician will send a referral to the hospital or provider where you want to get care. Your insurance will then either approve or deny the referral. If the service coverage is denied, you can ask your physician to help you appeal the decision. In some cases, that will lead to the insurance company agreeing to cover the cost of that part of care.

  • 4. Identify someone to help you through the approval process

    A financial counselor, authorizations specialist, or someone else who works with your primary physician can usually help you understand the process and monitor its progress. Sometimes the insurance company will assign someone to be a patient advocate or case worker, and this person may also be helpful in guiding you through the process.

  • 5. Get an estimate of the costs

    If you want to know the approximate costs you will be responsible for paying, financial counselors at your hospital can be helpful in providing an estimate of your medical costs based on the proposed plan of care.

What Can I Do If I Want to See an Out-of-Network Provider?

You can ask the insurance company to approve your out-of-network choice. It can take a lot of time and persistence, and you will need help from your in-network provider.

It’s important that you have a true and good reason to seek care at an out-of-network hospital. For example, if the care team has more experience with a specific and rare disease, and can provide better outcomes for your child. Better outcomes can save the insurance company money in the long-term, which can be an important factor in their decision making.

While this process can be effective in some cases, the insurance company always makes the final decision.

Step 1: Get a referral

Ask the in-network physician who saw you initially to send a referral for you to be seen at the out-of-network provider or hospital for care. When the second provider or hospital receives the referral, they check to see if the insurance company will authorize and pay for care at the new hospital.

Step 2: Make a plan if the insurance says no

If the insurance company does not authorize the care, then you can:

  • Seek care at a place that is in network with your insurance plan.

  • Ask your in-network physician to send a “Letter of Medical Necessity” to the insurance company outlining the reasons why they think your child should receive care at the out-of-network hospital. Your physician may have a team member who helps with this process.  The insurance company may ask your physician for additional information to support why it’s important that your child receive care out-of-network.

  • Get help from the out-of-network care team. They may be able to provide information to the insurance about their care and treatment successes. Ideally, the in-network physician and out-of-network physician can work together to write the Letter of Medical Necessity in the effort to get your insurance to authorize (pay for) out-of-network care.

PARENT TIPBe Patient and Persistent When Dealing With Insurance

Sometimes you may be confused by the technical medical and financial terms when you are learning about your insurance. It may be hard to find someone at the insurance company who can actually help you. One person may tell you that some care isn’t covered, and you may not know how to advocate for coverage that you think you need.

Try not to let these things increase your stress. Find someone on your care team to help you through this process. Your main role is to make sure that the medical offices are working with the insurance and conveying information about the reason you should be cared for at the out-of-network institution. You don’t have to do any writing or explaining, but you are the best person to make sure that the request makes its way to the insurance company and that the reasons for the referral are well explained.


Health insurance companies try to control their costs by forming agreements with specific groups of providers. In-network providers agree to give care to insurance policyholders at a lower cost to the insurance company than the higher rates charged by out-of-network providers. The insurance company incentivizes you to get care in-network – where the cost is lower – by paying a greater portion of your costs.

If you want to see an out-of-network provider, the insurance company may not pay any amount for the service(s) or it may pay a smaller percentage of the costs than it would for in-network care.

It is common that a hospital or provider will not schedule an appointment until your insurance company agrees to pay for the visit.

Once you understand what type of care your child will need, the social workers or financial counselors at the hospital can look at the typical costs for that type of care and give you an idea of what the cost may be. They can also look at your insurance and its structure to give you an idea of what portion of the costs you will be responsible for.

In recent years there have been many changes in the health insurance market that impact when individuals and families can buy a health insurance policy if they do not have one through their job or government program.

If you do not have health insurance and you are eligible for Medicaid based on your income, you will be guided on how to apply. Medicaid is a government program that helps pay medical costs for people who cannot afford other forms of health insurance. It provides insurance to low-income adults, children, pregnant women, elderly adults, and people with disabilities. It is a federal program that is managed by states.

Some states have additional programs for children with certain diseases or health problems like heart disease. If you live in a state with this type of program, a social worker who is assigned to be your case worker can usually help you apply for the program.

If you do not have health insurance and your income is too high to qualify for Medicaid or state insurance programs, then you can explore getting a health insurance policy for your family through an independent insurance agent or the national insurance exchange. The insurance options available to you will be different depending on where you live. Until you get health insurance, you will be responsible for paying the cost of medical expenses.

Hospitals do not want families to face financial hardship in order to receive care, and your hospital will try to work with you. They may have funds available to help cover the costs if you are unable to pay the amount that you are responsible for. The hospital may have financial counselors who will outline the process and typical costs for you. Ask if there is an option to set up a payment plan so you can pay over time.

The way health insurance typically works is that you regularly pay money (a monthly premium) to a health insurance company. This essentially allows you to share the risk of needing medical care with lots of other people who are also enrolled in the same insurance plan and paying monthly premiums.

Since most people are generally healthy most of the time, the money paid to the insurance company can be used to pay the expenses of the members who get sick or are injured and need medical care.