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Living With Conditions Insurance and Planning

If your child is living with a health condition, it is important to think about insurance and financial planning. Many parents worry about the additional health care costs that their baby may have. Proactive planning will not only help you prepare emotionally for what is to come, but will also help you plan financially for any big procedures or monthly costs that are expected. This section provides topics to consider as well as some resources that can help you along the way

Steps to Take

1)    Diagnosis

The first step is to get a confirmed diagnosis. The early identification of a condition is a very important first step in helping your baby to have the healthiest life possible. After a condition is diagnosed, you can begin discussions with health care providers and other professionals about the types of costs that the condition can incur. To learn about confirming a diagnosis, visit our Screening Outcomes page.

2)    Understand the Condition

Before beginning financial planning, it is important that you fully understand your child’s condition. Learn more about your baby’s diagnosis through discussions with health care providers, other parents, and even through individual research. Be sure to check out our Find a Condition page for general information on a disorder. Once you understand the condition, you can start thinking about how to prepare for the financial cost of caring for your child.

3)    Talk to Your Doctor

Your baby’s health care provider is a great resource to help you start making financial plans. In an upcoming visit, you can ask the doctor to help you create a timeline of any procedures that may need to take place in the future. You should also discuss medications or other interventions that you will need to purchase. Having a clear picture of what is happening now and what you can expect in the future will help you ask your insurance company about coverage.

4)    Talk to Your Insurance Company

Speak with your insurance company to learn about what will and will not be covered under your plan. Every insurance company is different, so it will be important for you to understand your benefits. After you have talked with your baby’s healthcare provider about what to expect as far as major procedures or monthly expenses, you can ask your health insurance company specific questions about with is covered and what portion of the cost you will be expected to contribute. When you speak to a representative, explain to them what types of procedures, medications, and other interventions may be involved in treatment to ensure that you learn all that you can.

5)    Learn about Support Organizations and State Assistance

If you do not have insurance or are struggling with payments even with a health insurance plan, consider speaking to state assistance programs or family support organizations to learn about your options for receiving help with payments.

State Assistance

Most states have programs in place to help families manage the extra costs associated with having a child with a health condition. If you are struggling financially, you may qualify for additional state assistance. Please visit your state-specific page to learn more about these programs or to gain access to the contact information for your state’s screening program.

Support Organizations

Family support organizations in your state may be able to explain specific state laws or support systems you can use in getting financial assistance in caring for your child. Again, please look at your state-specific page for more information on these types of programs.

The Catalyst Center provides a directory of organizations, sorted by state, which may be able to provide assistance to families with questions about coverage and financing of care for children with special health concerns.

The Patient Advocate Foundation’s Patient Services provides families with assistance to settle issues with access to care, medical debt, and job retention related to illness. Families having a difficult time gaining coverage for needed treatments and therapies can contact this organization for assistance. 

Legislation Relating to Insurance and Financial Planning

The Affordable Care Act (ACA)

There are two major sections of the Affordable Care Act in which newborn screening fits.

 The first one involves the coverage of “preventive health services”; services that aim to help people stay healthy. This section basically states that insurance providers must fully cover preventive care and screenings for babies, children, and teens. This means without co-pays, co-insurance, or deductibles; the insurance provider pays for it all. Parents may request newborn screening tests for conditions not typically screened for by their state to ensure that their babies are screened for all conditions on the Recommended Uniform Screening Panel (RUSP). So, even if your state does not offer a screening for one of the diseases on this list, you many request one and have insurance cover it. Learn more about preventive health services under the ACA here.

Most notably, this includes screening for critical congenital heart disease (CCHD) and severe combined immunodeficiency (SCID). Insurance companies have one year from when a condition is added to the RUSP to comply with the mandate to cover screening for that condition. There are currently no states screening for every condition on the RUSP, but several are screening for all but one condition. To see what your state screens for, visit your state’s page.

There are certain individual and group plans known as “grandfathered plans” that were in existence prior to the signing of the Act in March of 2010. If your health insurance plan was created or bought before the Act was signed, your coverage may be different. It is important to be aware of the status of your family’s insurance plan to know whether you will be completely covered for these preventive services, including newborn screening.  

The second section under which newborn screening could fall has to do with “essential benefits”. These are benefits that the Act requires health insurance plans to include in their coverage. Unlike in the earlier section this does not mean full coverage, but that there will be specified limits on co-pays, coinsurance, and deductibles. There is a list of these benefits, including maternal and newborn care. This could potentially include newborn screening itself as well as early treatment for diseases found through this service. This provision only applies to individual or small group plans; grandfathered and self-insured plans are exempt. Also, large group plans are not required to provide the full scope of these benefits. Once again, it is important to recognize what category you or your family’s health insurance plan falls under to learn whether or not you will definitely receive these essential benefits.

For more information on the Affordable Care Act, go to The Catalyst Center has also put together a helpful side-by-side comparison of major provisions of the ACA.

Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act, passed in 2008, makes it illegal for a health insurance company to change your premiums or deny you or your baby coverage based on your baby’s newborn screening result. Specifically, the result of a newborn screen cannot be used against you or your family. This means that even if you need to switch health insurance companies, the new company cannot discriminate against you or your baby because of a newborn screening test result.

Life insurance, long-term care, and disability insurance are not covered by GINA. While this does not necessarily mean that specific companies will discriminate against someone because of a genetic condition diagnosis, there is also no protection to prevent it from happening. To date, there have been very few reports of individuals being discriminated against based on genetic test results. If you have more questions, go to   

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Last Reviewed - 10/12/2018

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