Support for Families

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From the moment of diagnosis through treatment and beyond, the Pediatric Brain Tumor Foundation community is here for your family every step of the way. Here you'll find resources and support for pediatric brain tumor patients and survivors, their parents, caregivers, and siblings.


Insurance and Financial Assistance

A pediatric brain tumor diagnosis is expensive, and dealing with medical bills is stressful. Knowing how to navigate insurance and different types of expenses throughout your child’s cancer journey is important.

Insurance and expenses for newly diagnosed families

When your child is diagnosed, it’s important to find out whether your child’s doctors and hospital are covered by your insurance plan. Call your health insurance company as soon as possible. You can ask for a case manager so you can speak with the same person each time you call.

If you need help dealing with insurance, ask your doctor or social worker. They may be able to help explain to your insurance provider why they need to approve a treatment or medication.

Managing medical bills

You will probably get a lot of medical bills in the mail. A simple filing system can help you stay organized until you have the time to deal with the paperwork.

Buy several large 8×10 or 10×12 envelopes. Label each with a category that will be covered by insurance, such as:

  • Hospital bills
  • Hospital insurance statements
  • Doctor bills from your child’s oncologist, neurologist, and pediatrician
  • Doctor insurance statements
  • Diagnostic test bills (labs, MRIs, CT scans)
  • Diagnostic insurance statements
  • Pharmacy/medication bills
  • Pharmacy/medication statements
  • Explanations of benefits

Even if you don’t have time to open every bill as they arrive, put them in their envelope and find a place in your house where you’ll always keep the papers so they don’t get lost. You can also create a folder in your email inbox to make it easier to store and find messages with your insurance company.

If your insurance plan changes, be sure to talk with the new insurance plan to find out if your current healthcare team and hospital are covered or if the change in insurance means a change in your healthcare team. Your coverage may not be the same, and it is best to talk to the insurance company to help sort this out and plan for any changes.

Managing other expenses

You will probably have many other expenses because of your child’s care and treatment. It’s important to plan ahead so you’re not surprised later. These expenses may include:

  • Medications
  • Copay for medications
  • Copay for doctor appointments
  • Copay for procedures
  • Transportation and travel, including gas and parking for appointments and hospital stays and out-of-state travel
  • Hotel and lodging during treatment
  • Babysitters for siblings and other caregiving help
  • Home health aides and other at-home care
  • Assistance from an accountant can help you understand which expenses you can deduct on your taxes

You may have more bills than you can pay at once. Don’t ignore these bills. Instead, call your child’s hospital and doctors’ offices right away and ask to work out a payment plan you can afford. Many hospitals and doctors’ offices are happy to have you pay a little bit each month and will be patient with you as long as you tell them about your situation and don’t ignore them.

You can also talk to your child’s social worker to find out about programs like parking discounts and organizations that might offer financial help through resources like the Pediatric Brain Tumor Foundation’s Butterfly Fund.

Insurance and expenses for survivors

Pediatric brain tumor survivors need good health insurance, and they also need to know how to work with their insurance company to get their medical bills paid.

Without insurance, some treatments and medicines will be too expensive to afford. Even with insurance, there will be times you need to know how to work with your insurance company so that you can get the medical care you need.

Dealing with insurance during survivorship can be stressful. Whether you are the survivor or the caregiver, you can make it go more smoothly by staying on top of things from the start. Call your health insurance company and ask for a case manager so you can speak with the same person each time you call. Your doctor or social worker may also be able to help by explaining to your insurance company why they need to approve a treatment or medication.

Health insurance for survivors before they turn 26

The law says that a child can stay on their parent’s insurance if they’re under the age of 26. A brain tumor survivor may choose to stay on their parent’s or guardian’s insurance plan even if they’re married, move out on their own, go to college, or are offered insurance through their own job.

Insurance coverage after survivors turn 26

After a pediatric brain tumor survivor turns 26, they may no longer be able to stay on their parent’s insurance unless they’re disabled and a dependent (someone who depends on a parent to support them, according to special rules set by Social Security). It’s important to learn about your plan’s rules and what your child’s options are:

  • Some plans will allow older children to stay on their parent’s plan but will charge them more money.  Talk to your doctor and insurance company if you think your child qualifies to stay on your health insurance plan.
  • Survivors who have jobs may be able to get insurance through their employers.
  • Survivors may qualify for their state’s Medicaid program. You can learn more by searching on the internet for your state’s name and the word “Medicaid.”
  • The Health Insurance Exchange also offers plans made possible by the Affordable Care Act or ACA.

Survivors who are disabled or dependent may qualify for more than one insurance plan. For example, a disabled survivor may qualify to stay on one or both parents’ insurance plans and also qualify for the state Medicaid program. One plan would be the survivor’s primary plan (doctors and hospitals ask this company to pay first), and the other would be the survivor’s secondary plan (doctors and hospitals ask this company to pay the rest of what the survivor owes).

Insurance coverage for disabled survivors

Survivors who are disabled may qualify for Supplemental Social Security (SSI) or their state’s Medicaid program. The survivor will need to apply to these programs and give them financial and health records to prove they’re disabled. If someone qualifies for SSI, they may automatically qualify for their state’s Medicaid program.

The first time someone applies they often get turned down, so survivors may have to appeal this decision. If that happens to you, try to work with someone who has experience with this kind of appeal. If you don’t have someone to help you, you can call, search on the internet, or go to your local Social Security office and ask for help with your application or appeal.

Insurance coverage for disabled survivors after parents or caregivers retire

Before a survivor’s parents or caregivers retire, they should make plans for how the survivor will get health insurance. This will help make sure the move from a parent’s insurance to a new form of insurance goes smoothly. Survivors who were on their parent’s health insurance won’t be covered by their parent’s Medicare (the government health insurance plan that covers most retired people). Survivors will need to find their own health insurance.

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