Strategies and resources to help families navigate the financial challenges
Raising a child with a rare or undiagnosed condition can be a challenging journey. In addition to the emotional stress and uncertainty, families often face high medical costs, including hospitalizations, therapies, medications, and more. It can feel like an uphill battle, but there are strategies and resources to help families navigate the financial challenges.
Recognizing the direct and indirect financial costs of raising a child with a rare or undiagnosed condition is essential. Direct costs include medical care, therapy, medication, and adaptive equipment. Indirect costs involve lost wages due to caregiving responsibilities and other related expenses. Being mindful of these costs can prepare you to plan.
Once you grasp the potential costs, developing a comprehensive financial plan is essential. A certified financial planner (CFP) or a financial advisor specializing in special needs planning can be invaluable. They can help with budgeting, insurance choices, estate, and future planning. The Financial Planning Association can be an excellent resource for finding a financial planner to meet your needs.
Several strategies can help you manage the financial impact, including:
Track all medical expenses, including hospital visits, therapies, medications, etc. Medical expense tracking will keep you informed about your spending and can be useful for tax deductions and reimbursements.
Insurance is a critical component of your financial plan. Assess your health insurance coverage and ensure it meets your child’s needs. Review your policy’s out-of-pocket maximums for prescriptions, therapies, equipment, and mental health services. You may also want to consider disability and long-term care insurance.
Consider establishing a special needs trust. These trusts can help ensure your child has sufficient financial support throughout their life without jeopardizing their eligibility for government benefits. You can find an attorney specializing in special needs planning through the Special Needs Alliance.
A 529A or ABLE account allows you to save for your child’s future needs in a tax-advantaged way without affecting their eligibility for public benefits. You can learn more from the ABLE National Resource Center.
Consult with a tax professional to understand the best way to leverage available tax benefits for parents of children with disabilities, like medical expense deductions and tax credits.
Various organizations and programs offer financial assistance to families with a child with a rare or undiagnosed condition. These can help mitigate the financial burden:
Programs like Medicaid and the Children’s Health Insurance Program (CHIP) can cover some healthcare costs. Supplemental Security Income (SSI) provides cash assistance to people with disabilities.
Many nonprofit organizations provide financial aid, services, and support for families of children with rare or undiagnosed conditions. For example, the National Organization for Rare Disorders (NORD), Patient Access Network (PAN) Foundation, Patient Services Incorporated (PSI), and Global Genes offer resources for families.
In addition, TGen’s Center for Rare Childhood Disorders (also known as the Center) provides free genetic testing and clinical trials to identify disorders and unlock potential treatments.
Platforms like GoFundMe and JustGiving can effectively raise money for medical costs, travel, and other expenses. Be transparent about your needs, and remember to share your story widely to attract potential donors.
Knowledge is power. Learn as much as possible about your child’s condition and the associated financial aspects. Be your child’s advocate when dealing with medical providers, insurers, and schools. Join support groups and network with other families in similar situations. They can share resources and offer advice and emotional support.
The daily responsibilities of raising a child with a rare or undiagnosed condition can be overwhelming. When you’re just trying to survive another day, it might seem that focusing energy and effort on financial planning is a luxury. However, ensuring the financial stability of your family and the best possible care for your child can remove a burden from your mind.
The dedicated team at TGen’s Center for Rare Childhood Disorders and others continue their groundbreaking research to find answers and develop treatments. Through the generosity of donors, the Center provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children.