Finding Financial Support for Families With Children Diagnosed With a Chronic or Terminal Illness

Trying to care for a child with a chronic, or worse, terminal illness can take a huge emotional and financial toll on the entire family. Anxiety over the child’s quality of life, stress about medical bills and medication, rising health insurance cost and the impact of it all on other family members are just a few of the challenges parents and caregivers face. Fortunately, there are financial resources, support tips and expert insights in this guide to help navigate this difficult situation.

Caring for a child with a severe illness can be emotionally and physically draining for parents and siblings. The physical challenges, medical needs and financial implications are some of the concerns you'll face along with dealing with your child's emotional needs and the effect a prolonged illness can have on the whole family. Below are some common challenges and tips for how to best address them.

Raising a child with additional health care needs can have significant financial impacts: medical visits that disrupt work schedules and limit employment opportunities, high cost of health care and equipment, having access to transportation, limited funds for other household priorities such as groceries or repairs, and an inability to afford child care. Fortunately, with strategic planning, budgeting and utilizing certain resources, parents and caregivers can ease some of the financial burdens of long-term medical care for a sick child.

For many families, the financial burden often comes from office visits, long-term medication and medical equipment. For example, it can cost over $100,000 for cancer treatment, according to AARP. In the U.S., more than $4 trillion was spent on health care in 2020.

Health insurance may help cover some of those financial costs. Without health insurance, a family may pay out-of-pocket for medical expenses.

You can use this step-by-step guide to help you manage your finances when caring for your child with a terminal illness. Take the time to deeply consider these financial areas and develop a plan that works best for you and your family.

In addition to the cost of health insurance, copays and medications, parents may also need to pay for in-home nursing care, childcare and transportation assistance. That makes getting the most of a health insurance plan vital. Explore the following tips so you can choose the right, affordable health insurance for your child's needs.

If you don't have adequate health insurance for your kids or they're covered by plans with high deductibles and limited benefits, don't despair. Some programs assist in paying for healthcare so your child can have his or her needs met.

From helping pay medical bills to providing transportation, there are an array of assistance and support programs available to help families raise a chronically ill child.

No family wants to forego the treatment that a child needs because of the stress of high out-of-pocket medical expenses. There are government resources to help those with a chronic illness, who meet certain eligibility requirements. Explore some federally-funded options below.

• Child Care Aware of America: This organization helps military families in finding quality, affordable child care that fits their needs, and it also offers child care fee assistance to eligible members of the military and the U.S. Department of Defense.
• Early Head Start and Head Start programs: These free, federally-funded programs, which are available in every state, provide educational activities along with some free medical and dental care services and healthy food. It serves pregnant women and families with children under age three. Head Start programs are for children ages three to five.
• The Child Tax Credit (CTC): The federal government and seven states (Oklahoma, California, Maryland, Maine, New York, Idaho, and Colorado) have child tax credits. CTC is a partially-refundable tax credit available to low-income parents with qualifying dependents under 17 years old. Taxpayers can claim up to $2,000 for each child.
• The Temporary Assistance for Needy Families (TANF): States receive federal funding to run their own TANF programs which provide families with temporary financial assistance and may include help with childcare, job preparation and work.
• The Children’s Health Insurance Program (CHIP): This program offers health coverage to children for families who meet certain income qualifications, which vary by state. The program covers medical and dental care for uninsured children and teens up to age 19.

Every state receives federal funding to support child care assistance programs. The funding helps families who qualify afford child care so they can work or go to school. Explore your state’s qualifications with this interactive map.

Click or tap on the states to find assistance programs in your area.

For families who have no insurance or are underinsured, there are resources available to help them afford the medicine needed for their child’s treatment. Some pharmaceutical companies, state programs and nonprofits have prescription assistance programs (PAPs) that offer free or low-cost medicines if you qualify.

• AZ&Me: For patients who are having trouble affording their AstraZeneca medications, there is a patient assistance program that can assist with certain qualifications. They also have a copay savings program that provides financial assistance if you are commercially insured and not enrolled in a government assistance program.
• Merck Helps: This patient assistance program provides certain medicines and adult vaccines for free to people who do not have prescription or health insurance coverage.
• Blink Health: This drug-discount program is designed to help you find medicines at the lowest price — sometimes cheaper than through your plan. Keep in mind: Your plan may not count the medicine’s cost and your copay toward your deductible.
• GoodRx: This drug-discount program gathers current prices and discounts to help you find the lowest price for prescriptions. Another perk: GoodRx coupons will also lower the cost of your prescription and are accepted at most U.S. pharmacies.
• RxAssist: Access various patient assistance programs through RxAssist’s comprehensive database including pharmaceutical company programs and other resources to help you reduce your medication costs.

Reliable transportation when you have a sick child and could use the extra support is priceless. There are programs that provide medical transportation services for families in need, and many provide direct financial assistance, reimbursement or vouchers. Due to COVID-19 safety precautions, some transportation services may be limited, so it’s important to check in with organizations for updates. Below are some options to explore.

• Air Charity Network: This nonprofit provides free air transportation operated by volunteer pilots to specialized health care facilities and serves all 50 states.
• Angel Flight Soars: This nonprofit organization provides free flights daily for medical services. It arranges free air transportation for people who need to travel to receive life saving medical treatment, but can't afford it.
• LifeLine Pilots: This organization of volunteer pilots provides free flights for lifesaving treatments to passengers in financial need.
• Mercy Medical Angels: This nonprofit provides transportation assistance by air with volunteer pilots and commercial airlines and by ground including gas cards, bus and train tickets.
• Miracle Flights for Kids: This organization offers financial assistance to low-income children for commercial air travel to obtain medical care.
• Children's Flight of Hope: This nonprofit provides free, private air transportation to and from medical facilities for children in need of medical assistance and care.

Connecting with people who understand specifically what you’re going through with your child’s illness or disease can be a powerful support tool. These connections can help provide valuable insight and resources on medical and treatment information, financial support, nonprofits, advocacy, and more. Below you can find organizations representing some of the most common chronic illnesses and medical conditions children face.

• American Childhood Cancer Organization (ACCO): This nonprofit provides education on childhood cancer, treatment protocols, medication, and research. Local affiliates provide direct support such as support groups, children camps, and emergency financial assistance to patients and their families.
• Asthma and Allergy Foundation of America (AAFA): A nonprofit that provides advocacy, research, education, and support for those dealing with asthma and allergies.
• The Cystic Fibrosis Foundation (CFF): Whether you’re looking to talk to someone, find a local chapter or care center, navigate insurance options, find financial assistance or connect to legal experts, this nonprofit organization has plenty of resources to help.
• The Children’s Diabetes Foundation: This nonprofit is the fundraising arm of the Barbara Davis Center for Diabetes and provides financial support, education, advocacy, support groups, and scholarships among other resources.
• Child Neurology Foundation: This nonprofit provides awareness around neurological disorders such as epilepsy, along with research, peer support, and scholarships and grants.
• Family Reach: This national nonprofit organization offers financial support for those diagnosed with cancer as well as caregivers and families. It provides a financial treatment program with downloadable financial guidebooks, access to Certified Financial Planner (CFP) professionals and an emergency relief service to help cover living expenses.

Nonprofit advocacy groups offer a variety of services and resources that can help patients and their families in need, including support, medical information, research, lists of providers/clinics, and other resources. The following is not an extensive list, but a good place to start with valuable groups that assist families with sick children.

• NeedyMeds: This nonprofit provides information on health care programs while also helping patients afford medications and other health care costs.
• Patient Services Incorporated: This organization helps provide financial assistance with patients' medication, health insurance premiums and copay, and it provides support navigating health insurance plans, giving legal advice, and how to cover travel costs.
• PAN Foundation: This nonprofit helps underinsured people with life-threatening, chronic, and rare diseases get the prescribed medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.
• The HealthWell Foundation: This nonprofit dedicates itself to helping the underinsured by assisting with copays, premiums, deductibles, and out-of-pocket expenses including travel costs.
• The Assistance Fund: This organization provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses to families dealing with high medical out-of-pocket costs.

Facing expensive medical treatments can have families left pondering how they'll manage medical hardship. Fundraising is a simple solution that can help ease financial stress, and it's a way to involve family and friends in a meaningful experience.

Beyond handling the physical challenges and medical needs of caring for a child with a chronic or life-threatening illness, a parent has to deal with a child's emotional needs. It can be difficult to have these conversations as parents grapple with their own feelings such as guilt or a desire to protect the child emotionally. But it's important to speak openly and truthfully to avoid misinterpretation. Below are a few guidelines to help parents’ communicate as effectively as possible.

Understandably, your child will have many feelings about the physical changes he or she is experiencing. Let your child express those emotions through talking, music, drawing, or writing, or whatever medium allows them to express themselves freely. It's common for kids to think they brought their sickness on by something they thought, said, or did. Reassure them as often as necessary this isn't true.

You may not have all the answers and be able to promise that it's going to be OK. Listen to your child, regularly ask about their feelings, and acknowledge those feelings. If they ask about death, that's natural and it’s alright to talk about it. Consider their age and maturity in your response.

Confusion, fear, and anxiety are natural. However, if this becomes an interference with daily function, or your child seems withdrawn, depressed, and shows extreme changes in eating and sleeping habits unrelated to the physical illness, it may be time to consult with a therapist or child life specialist. These professionals are trained to provide support and help develop family coping strategies.

Kids will undoubtedly have a lot of questions about their condition and why their body feels different. It's best to be honest with your child and explain the illness to them. Usually, the doctor or medical team can provide some guidance on how to say it.

Take into account the symptoms, procedures, and treatments when talking to them. Have answers ready for the most obvious questions. Answering confidently and calmly will be reassuring, but answering nervously will have them respond in kind. Speak in age-appropriate terms they can understand.

Many chronic illnesses disrupt a child's schooling so it's important to plan and communicate often to your child and your school.

In a state of stress and caring for a chronically ill child, it can feel natural to put your own needs aside to care for your loved ones. However, self-care is just as important for you. Caring for yourself sets you up to effectively care for others. Remember: you can’t give what you don’t have, so it’s important to assess your needs. Follow this step-by-step guide for self-care tips.

There are many resources to help parents and caregivers with the various aspects of caring for a sick child. Along with the resources already mentioned earlier, this is not an exhaustive list, but a good place to start searching for assistance.

• Global Genes: This nonprofit is dedicated to helping those with rare diseases. It provides patients resources for advocacy and connects them to researchers, clinicians, government and other stakeholders.
• Dana-Farber Sibling Program: This Dana-Farber Cancer Institute program offers comprehensive support to the siblings of pediatric patients. They provide online support groups for teenagers and adolescents.
• Kids of Courage: This volunteer-based organization provides advocacy, financial assistance and emotional support for sick children and their families.
• Special Spaces: This organization creates dream bedrooms for children with life-threatening illnesses while addressing their medical needs.
• The Sibling Support Project: This national organization helps create community-based peer support programs for young siblings of people with special health, mental health and developmental needs.
• Make-A-Wish Foundation: For more than 40 years, this nonprofit organization and its team of volunteers help grant wishes to critically and chronically ill children.
• Super Sibs!: This program offers support and recognition to children with brothers and sisters who have cancer.
• Give Kids The World Village: Serving kids from around the world, this 89-acre, nonprofit "storybook" resort in Central Florida provides children with serious illnesses and their families a weeklong, cost-free vacation.
• Comfort Zone Camp: This is one of the nation’s largest bereavement camps for kids ages 7-17 who have experienced the death of a loved one. These camps are free of charge and held year-round in California, Massachusetts, New Jersey and Virginia.
• Believe In Tomorrow: This nonprofit provides hospital and respite housing services to critically ill children and their families so they can stay together during a medical crisis.
• Starlight Children's Foundation: This nonprofit spans more than 25 years and provides entertainment, education and family activities that help patients and their families cope with the pain, fear and isolation of prolonged illness.