Living With Conditions

Insurance and Planning


After working with your child’s medical care team to understand the diagnosis, the next important step is to think about insurance and financial planning. Some parents worry about the additional health care costs that their baby may have. This section provides topics to consider, as well as some resources, that can help you along the way.

What happens next?

The early identification of a health condition is a very important first step in helping your baby to have the healthiest life possible. Once you understand the condition, you can start thinking about how you can prepare for the financial cost of caring for a child with a health condition. 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 can be expected.

Your baby’s health care provider is a great resource to help start making these 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 or 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.

Additionally, a number of companies provide financial planning services that specialize in the needs of families caring for a child with special health concerns. Before utilizing these services, complete the following:

  • Speak with your baby’s doctor to understand the upcoming expenses associated with the care of your child
  • Understand your insurance benefits by speaking with your insurance company
  • Consider speaking with a family support organization in your state, which may be able to explain specific state laws or support systems you can use in getting financial assistance in caring for your child (see resources outlined in the following section, below)

The Affordable Care Act and Newborn  Screening

Under the Affordable Care Act (ACA), parents may request newborn screening tests for conditions not typically screened for by their state—fully covered by insurance—to ensure that their babies are screened for all conditions on the Recommended Uniform Screening Panel (RUSP). Section 2713 (a) of the Act states, "A group health plan and a health insurance issuer offering group or individual health insurance coverage shall, at a minimum provide coverage for and shall not impose any cost sharing requirements for… (3) with respect to infants, children, and adolescents, evidence-informed preventive care and screenings provided for in the comprehensive guidelines supported by the Health Resources and Services Administration." This includes the entirety of the RUSP approved by the Secretary of the Department of Health and Human Services.

Most notably, this includes screening for critical congenital heart disease and severe combined immunodeficiency, the two conditions most recently added to the RUSP (September 2011 and May 2010 respectively). 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 states page. For more information on which preventative services are covered by 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 and the implications for children and youth with special health care needs (pdf).

Insurance Questions

Q: I don’t have insurance, how am I going to pay for all of this?
A: Most states have programs in place to help families manage the extra costs associated with having a child with a health condition. Please visit your state-specific page to learn more about these programs or to gain access to the contact information for your state screening program.
Q: I have insurance, but will it cover everything my baby needs?
A: Every insurance company is different, so it will be important for you to understand your benefits. After you have talked with your baby’s health care provider about what to expect as far as major procedures or monthly expenses, you can ask your health insurance company specific questions about what is covered and what portion you will be expected to contribute. If you find that your insurance company is not covering enough of the expenses and you are struggling financially, you may qualify for additional state assistance. Please visit your state-specific pageto learn more about these programs.

The Catalyst Center provides a directory of organizations, sorted by state, that 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 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.

Q: Can my health insurance company discriminate against me or my baby because of a newborn screening test result?
A: A federal law passed in 2008, called the Genetic Information Nondiscrimination Act (GINA), 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.
Q: What about other kinds of insurance?
A: Unfortunately, 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