Financial Help for Families With Chronically Ill Children

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In addition to the many other challenges, caring for a chronically ill child can put a financial strain on your family. Cost for the treatments, medications and special services your child requires may far exceed your ability to pay for them. Certain provisions of the Affordable Care Act as well as various private and public organizations can help in meeting at least some of your financial needs.

Affordable Care Act

  • The ACA prohibits insurance companies from denying coverage based on pre-existing conditions and also allows children to remain on their parents' insurance until age 26. Additional provisions in the ACA allow for annual limits on out-of-pocket medical expenses; greater coverage of generic medications, which are typically less expensive than their brand-name counterparts; and the end of annual and lifetime caps on the amount that insurance companies will pay for most medical costs associated with chronic illness. Families that meet income qualifications can further reduce their medical expenses by taking advantage of health insurance subsidies through state or federal exchanges.

Medicaid, SSI and CHIP

  • Qualifying families may be eligible for government programs that supplement the health insurance of a chronically ill child, including Medicaid and Supplemental Security Income from the Social Security Administration. Expanded Medicaid coverage introduced with the ACA in participating states provides coverage for individuals and families making up to 138 percent of the federal poverty level. For those families that earn too much money to qualify for Medicaid, the Children’s Health Insurance Program, or CHIP, provides low-cost health coverage in every state.

Tax Deductions

  • You might be able to deduct excess medical expenses not covered by insurance on your annual tax return. You may list your medical expenses as an itemized deduction if they exceed 10 percent of your adjusted gross income. For families caring for a chronically ill child, the expenses can add up quickly, so carefully track your expenses throughout the year. Note that the deduction applies for you as the filer as well as your spouse and all dependents you claim on your tax return. In addition, it covers a variety of expenses related to medical care, such as transportation costs and specialist services — all of which can add up to help you meet the 10 percent threshold.

Private Organizations

  • Church and community groups, social service programs, charitable foundations and organizations devoted to your particular chronic illness are all potential sources of short- and long-term financial help for your family. Through patient assistance programs, some pharmaceutical companies even provide free medications to patients who cannot afford to purchase medications.

Clinical Trials

  • Clinical trials can cover all or part of the cost of treatment and medication for a chronically ill child. If your child qualifies for a clinical trial, she could gain access to new medication and therapies as well as treatment with leading physicians in the field. Clinical trials have potential downsides, as the new drugs or treatments might not prove as effective as the existing ones. However, if a trial provides an effective treatment or cure for your child, the new research can provide both the cost savings and the advanced medical care your family needs.

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