Caring for those in Need

Connecting the Financial Dots

While learning about the specifics of a child’s diagnosis, parents can check their child’s eligibility for different public assistance programs, which can help cover the costs not included in medical insurance and provide alternative and beneficial therapies.

BY Jordan Capizola and Amelia Mulford | November 2017 | Category: Financial Planning

Connecting the Financial Dots

The U.S. Department of Agriculture estimates that it costs $233,610 to raise a child from birth to 17 years old. That is, it costs $233,610 to raise a child before factoring in the costs associated with special health needs. Once a child is diagnosed, the financial and emotional aftermath can be overwhelming. Despite the anxiety and uncertainty that may arise, there are effective ways to plan financially for raising a child with special needs.

An advisable first step in planning financially for raising a child with special needs is to talk with the child’s primary care provider or other members of the medical care team. The child’s healthcare provider can assist in creating a timeline of any procedures that the child may require further down the road. The doctor’s visit is also a valuable face-to-face opportunity to discuss medications or other anticipated interventions early, so that the family can establish a budgeting process ahead of time. Once families have this conversation, they can gain a clearer picture of what to expect for short- and long-term monitoring, treatment, and therapy.

While learning about the specifics of a child’s diagnosis, parents can check their child’s eligibility for different public assistance programs, which can help cover the costs not included in medical insurance and provide alternative and beneficial therapies. This can include programs such as Medicaid, Supplemental Security Income and other state-specific programs (it is important to note that programs, requirements, and benefits can vary by state). It is a good idea to get in touch with an insurance specialist who can help navigate the complicated world of insurance claims and help ensure a child is receiving their maximum benefits. Central resource aggregation websites, like the Catalyst Center, are also a useful starting point for filtering by state or demographics to locate relevant direct services.

Condition-specific advocacy groups are another great resource for families embarking on the challenge of connecting to care and resources. These groups can help point families in the right direction to find resources their child may be eligible for and what forms financing of care may take under different insurance plans. Many patient and advocacy organizations house directories of providers who specialize in the condition, as well as guidance to benefits counseling and care coordination services. Some organizations even offer their own assistance packages and scholarships to ease some financial strain for families. Finally, family stories promoted through advocacy organizations can provide hope, support, and practical strategies for families facing similar obstacles.

There are countless programs, accounts, and plans to consider, but it is important to read the fine print. Certain financial plans can disqualify children from the important public assistance they rely on. For example, a 529 Plan, which saves money for a child’s education, can count as assets held in the child’s name, thus disqualifying them from certain public benefits. An alternative for parents of a child with special needs is the 529A Plan, which allows parents to save for their child’s future while ensuring they remain eligible for public assistance.

It is also essential for parents to update their wills to ensure their child can be supported throughout their adult life. Parents can establish a Special Needs Trust that serves multiple purposes. A Special Needs Trust can hold assets for the child while preserving the child’s eligibility for public assistance programs. It can also be named as the beneficiary in an insurance policy, retirement plan, IRA, etc. and ensure the child will have financial support after their parents pass away.3 Parents need to remember that effective financial safeguards will continue to support a child even after the parents’ death, and that financial planning should account for the child’s ongoing and evolving needs throughout their entire life.

Finances are confusing and frustrating, and the ever-changing landscape of healthcare in America may not provide clarity for planning and decision-making in the future. Though these stressful situations may feel lonely and isolating, it is important to remember that there are professionals out there who are ready to help and families who are willing to listen and share resources. Financial advisors can guide parents through the financial planning process. There are also numerous organizations that help parents and their children find access to treatment, therapies, and resources throughout their lives. No matter the situation, there is always someone out there ready to help.


Jordan Capizola is a Program Assistant at Genetic Alliance, where she works in patient centered clinical research and maternal and child health. Jordan is interested in the non-normative pregnancy and parenting experience and in disease control and prevention. She received her BA from the George Washington University in Washington, DC and will be returning to school next year to get her Master’s degree in disease control.

Amelia Mulford is the Program Assistant for Expecting Health, Genetic Alliance’s maternal-child health initiative. Amelia is interested in the ways that health systems can support families and individuals as authorities on their own medical experience. She holds a BA from Lewis & Clark College in Portland, OR and plans to pursue a career in genetic counseling.