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.
Challenges of Caring for a Child With a Serious Illness
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.
Being honest and explaining the illness
A child needs to understand that he or she is sick and will be undergoing a lot of medical care. Explain that although the hospital, tests and medicine may seem scary, it's all part of helping them feel better. You can explain on your own or ask the medical providers for assistance and tips. Having age-appropriate discussions about their illness with your children is key to helping them cope and ensure they understand what is occurring in their world.
In addition, you can find certified child life specialists at many children’s hospitals. These specialists are trained in the developmental impact of illnesses and injuries and can help children and siblings cope with acute and chronic illnesses.
It’s important to talk with your child about the changes affecting his or her body and how they feel about it. Learn what your child is experiencing to help them share their emotions. You may also consider music, drawing or writing as ways to help them manage and express their feelings. Need the inspiration to get started? Explore the Experience Journals, which are a collection of stories for children and teens living with physical or emotional illness.
Maintaining childhood routines
While a child with a serious illness requires extra attention and affection, it's still important to avoid spoiling or coddling them, which can make it hard for a child to sustain normalcy. Kids thrive in structured environments and handle change best when it occurs within a familiar routine.
Balancing sibling relationships
The family dynamics can shift drastically when a child is seriously ill. Parents should pay close attention that their other kids don't feel neglected by the needs of their sick siblings. It’s important to spend special time with each child or also include them in their sibling’s treatment process. Brothers and sisters can help choose their sibling's favorite toys or outfits for the hospital, and they can be a good support and friend when their sibling needs it. Child life professionals can also help talk with siblings and help them navigate their feelings about their brother or sister.
Parenting a child with a chronic illness can be extremely stressful. There’s a lot to undergo including worrying about the well-being of your child, disruption to your family's routine and balancing the demands of your work schedule, finances and medical visits. It’s important that parents ensure they take care of themselves and properly manage daily stress. The Caring for a Sick Child community is an online support group for the parents of kids with chronic illness. Caregivers can find help, advice and information about how to care for their families.
How Families Can Thrive Financially
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.
Managing Finances During Difficult Times
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.
Establish a timeline of events and potential costs
Where do you see yourself throughout the phases of your child’s health condition? Will you need to arrange for a caregiver? Or transportation to and from clinic appointments? Consider all the financial expenses that you may face and plot them out.
Examine your current financial situation
Now that you have a timeline, think of how you'll cover the costs. Calculate all your sources of income (including federal benefits for your child) and current expenses such as a mortgage, car bill, groceries and gas. Include the cost of medication, therapy, medical supplies and anything else related to your child’s needs. By creating and following a budget, you can keep your finances manageable.
Identify potential challenges in your timeline
Find gaps in your timeline where you foresee money or other types of support being an issue. Maybe it's a lack of savings, a family member passing or problems obtaining federal or state benefits.
Make a plan to address those challenges
Start building a financial safety net as soon as possible, even if you can only contribute a small amount each month. Financial experts generally recommend three to six months of living expenses should be in your savings at any given time. If you’re not sure where to start saving, try something from this money-saving list. Also consider pursuing other forms of support like fundraising, grants and assistance from nonprofits.
Periodically reassess your timeline
This will help make sure you’re sticking to your goals. As life happens, you may have to readjust it, but having a financial plan in place will help you feel more secure about whatever twists and turns you may face.
Choosing the Right Health Insurance
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.
Tips on Choosing the Right Health Insurance
- Check all options for health care coverage. Check to see if you or your child is eligible for other coverage such as Medicare, Medicaid, a state-run child health insurance plan (CHIP) or insurance through a parent or spouse's job. Visit HealthCare.gov to apply for CHIP or Medicaid or shop for a plan. Open enrollment is mid-November through February. If you need to change insurance providers and it is not within the open enrollment timeframe, you may consider looking into “qualifying life events” and see if you are eligible for a special enrollment period.
- Pay attention to the summary of benefits. The summary of benefits explains the plan's key features, such as the covered benefits, cost-sharing provisions, coverage limitations and exceptions. It may be good to brush up on health insurance glossary terms to ensure you’re knowledgeable about what plans include. A few common terms to be familiar with are out-of-pocket cost or cost, charge, price and reimbursement.
- Leverage what you do know about your child's health needs. If there's a doctor you like or a certain prescription drug your child needs to take, look for a plan that covers them. Otherwise, you may have an out-of-network cost or have to pay out-of-pocket.
- Be mindful of the total costs for health care. Your monthly cost for coverage is called a "premium." The deductible is what you have to pay out-of-pocket for medical services before insurance coverage begins and that varies based on the plan you choose. Think about both kinds of costs when shopping for a plan so you'll find one that you can truly afford and that fits your budget. Generally, insurance plans with low premiums have high deductibles, and high premium plans have low deductibles.
- Familiarize yourself with the types of insurance coverage. There are catastrophic, bronze, silver, gold and platinum plans. All these offer free or discounted visits to the doctor for services such as routine checkups, vaccinations and some preventive care. Many plans also provide discounts on prescription drugs and other services. However, specific benefits vary from plan to plan. Consider what matters to your family and choose a plan based on how well it meets your needs.
How to Pay for Care
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.
Get financial assistance for health insurance
If you buy insurance through your state’s health insurance marketplace and meet certain eligibility requirements, you may be able to get financial assistance to help pay your monthly premiums. The marketplace will pay part of the premium, and you will pay the rest.
Contact a nonprofit
There are many nonprofits and advocacy organizations that specialize in helping patients afford costly medical care. For example, Good Days is an advocacy organization that provides resources for life-saving and life-extending treatments to people in need of access to care. If approved, they provide financial assistance for the full calendar year, or until funds are exhausted. Another option is the National Organization of Rare Diseases (NORD), which helps patients obtain life-saving or life-sustaining medication.
Visit a local community health center
Taking your kids to a federally funded community health center is another option for low-cost medical care. They offer medical care on a sliding scale based on your income. They can also help you get health insurance and usually will accept that insurance once you are enrolled. To find a center near you, visit the Department of Health & Human Services (DHHS) health.
Ask for reduced rates or estimates
Many doctors or clinics will charge a reduced rate if you don’t have insurance. In some cases, they may offer a discount if you pay upfront for a service or treatment. This can save you money and help you stay on track with the medical care budgets you’ve created.
You can also ask for estimates to better understand what you’ll be paying and manage your finances. In the past couple of years, health care providers, organizations and insurers are beginning to provide more transparency with costs.
Talk to a medical social worker or a hospital-based financial counselor
Medical social workers can help lessen financial burdens. They can assess financial barriers you may be facing and assist with living costs, such as meal tickets, gas cards and housing (for example, some can arrange accommodations at a local Ronald McDonald House).
You may be able to find financial counselors at your hospital. Check with your hospital to see if they offer this service. These financial counselors can discuss upcoming bills and repayment options.
Tips on Applying for Grants and Funding
Finding alternative methods for paying for medical bills can help alleviate stress for families burdened by the financial impact of having a child with a chronic illness. Thankfully, many organizations specialize in helping people pay down expensive medical debt through grant funding.
- Search online. A quick online search will help identify potential grants and funding at both the federal and state level. A good place to start is Grants.gov or USAGrantApplication.org, which both have nonprofit funded grants that can help pay medical bills.
- Be mindful of eligibility requirements and timing. Carefully read through all the instructions to make sure that you meet all of the application requirements and can meet the deadline. Some grants are specified for certain medical conditions such as rare diseases, specific age groups, children with disabilities or certain medical needs such as financial assistance with a prescription or medical equipment.
- Ask for assistance. Talk to your child’s medical team before pursuing medical equipment so that you can be specific in your request and avoid acquiring equipment that may not fit your needs.
- Try for as many as you can. Most grant applications are online and free, so it’s easy to apply. Funds can be limited so it’s best to apply for as many as you can to maximize your approval chance.
Where to Find Support Programs
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.
Government Assistance Programs
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.
Local Assistance Programs
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.
Copay Assistance Programs for Prescription Medication
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.
Medical Travel Assistance
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.
Support Programs and Organizations for Specific Medical Conditions
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.
Ways to Fundraise
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.
Sell an online cookbook
Many people love to cook and try new recipes. Invite people to contribute their favorite recipes so you can compile them into a cookbook. Provide a copy or discount to those who participate. Include images and an interesting layout for visual appeal.
Host a virtual auction
You can do this on Facebook by creating a group, posting your items, and taking bids in the comments. Add to your own inventory with donations from businesses. Be creative and include tickets to local shows or tours or gift cards to popular restaurants and venues. Feature top bidders and high-value items to spark interest.
Teach a class
Do you know how to give stellar presentations? Are you a talented dancer? Fluent in a second language? Use your skills to raise funds to help cover medical expenses by teaching a class and charging a fee to participate.
Prep and sell lunches
Try selling pre-order lunches to your coworkers in support of yours or a loved one’s health care or medical expenses.
Caring For Your Child and Helping Them Cope
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.
Dealing With Difficult Emotions
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.
Answering Tough Questions
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.
Here are some tips to keep in mind:
- Explain the child's illness and the potential impact on school such as frequent absences, activity restrictions or fatigue.
- Establish a plan to help keep up with schoolwork if there are absences and any special services for instruction or mobility around school grounds. Your child might be entitled to a 504 Plan, which will specify physical accommodations. It may be helpful to explore similar accessibility modifications for their disability at home.
- Work closely with the teachers to plan for school workload and to discuss adjustments to deadlines.
- Figure out if your child might qualify for free services like Individual Education Programs (IEPs) or tutors under the Individuals with Disabilities Education Act (IDEA).
- Find out if your child’s hospital has school services. You may be able to find teachers who can tutor and help keep up with your child’s school assignments. Some children’s hospitals — for example, Lucile Packard Children’s Hospital at Stanford — offer these schooling services to help families and their children who have prolonged hospital stays.
Caring for Yourself
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.
Step back and objectively examine how you're doing
Observe how you're managing the stress of your child’s illness. Recognize warning signs that you’re overextended, such as sleep disturbance, forgetfulness and irritability.
Make small changes to recharge
Opt for a lighthearted novel over reading the news. Spend 10 minutes meditating or focusing on your breathing. Meditating can boost your mood according to researchers at Johns Hopkins University who conducted a meditation study that concluded mindfulness meditation programs could help improve anxiety.
Start processing on paper
Whatever is taking up space in your mind — important phone numbers, medication instructions, insurance materials, questions for the doctor — should go in a notebook. Let it live there so you can release your mind and relax.
Create an emergency care plan
Having a list of solutions for possible scenarios will help you feel more prepared, freeing your mind up for other important things.
Know how people can help you
Make a list of ways others can lighten your load. That way, if they ask to help, you have an immediate answer.
You can find understanding, advice and encouragement from in-person and online support groups.
To find more insights and advice to help parents navigate caring for a sick child and finding financial resources to help with medical service and treatment, we reached out to three financial experts.
- How can families who care for an ill child prepare themselves for the considerable costs during the diagnostic, treatment, and follow-up care phases of the disease?
- What resources would you recommend to help parents both financially and mentally support their ill children?
- What are some unexpected services parents may not realize they need and get help with to alleviate financial burden?
President/Founder of Silverton Mortgage, Founder Silverton Mortgage Foundation
Home Insurance Expert with USInsuranceAgents.com
Senior Financial Advisor at Modera Wealth Management
Resources for Chronically Ill Kids
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.
About Erin C. Perkins
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