This is not intended to be advice, but rather a compilation of tips from some of our families. The most important thing we learned is this: be wary when people give you financial advice and do not know your whole financial picture. Each action you take may have an unintended consequence. We recommend seeking out a reputable Certified Financial Planner (CFP®), and make sure the one you hire is listed here: https://adviserinfo.sec.gov 

• Some illnesses are classified as Compassionate Allowance under Social Security. This means, if an individual has worked and paid into Social Security, applying online is fast and is approved in about only 3 weeks. 

• Individuals should look into what disability benefits their state offers as well as what their employer has. Some individuals may be able to work but everyone is different.

• Some families find it helpful to meet deductibles early in the year, which could be easier than having multiple claims. One dad we talked to said that having a big scan that met his deductible in January meant he spent less time dealing with insurance the rest of the year.

• However, one CFP (Certified Financial Planner) recommends that you wait to pay each bill–some will be covered differently than others, and it is almost impossible to get reimbursed.

• Get your estate plan, important papers, and beneficiaries all in order.  Provide a list of usernames, passwords, and subscriptions to your caregiver/partner.

• Demand good healthcare. It is your right. The Center for Medicare Advocacy is a good resource for those on Medicare. And, peer to peer review can be requested by your doctor if you are insured privately. 

• Make sure the caregiver is properly insured–you don’t need any more surprises! Once someone is diagnosed as terminal, that person is no longer insurable. However, you can purchase life insurance, disability insurance, and long-term care insurance for their caregiver to hedge against further financial pitfalls.

• Grants and resources are available and helpful for many situations. Do a Google search to see if there are any for which you qualify.

• Here are a few very personal financial considerations: accelerated benefits from life insurance are often available, and it may be possible to access retirement benefits early with only tax consequences, no early withdrawal penalties. Again, these actions should be done in concert with advice from a financial planner who can see your entire financial picture.

• A few words on budgeting: no one likes to do it, but it does help. Your anxiety will be reduced when you control the things you can control, and even if your budget is upside down, you can make a budget and stick to it. And, don’t be frustrated with yourself!

• When you budget, leave room for surprises, be conservative, and check over your bills and auto drafts carefully. 

• Finally, recognize the emotions associated with money–give yourself some grace when having financial discussions with your family, and remember, your true wealth is in your legacy.