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Financial, Insurance, and Legal Information

When you find out you have interstitial lung disease (ILD), the furthest thing from your mind may be the financial, insurance, and legal issues that will arise over time. But there may be many. There may be legal considerations, such as “Who should be in charge of my care when I can no longer be?” and “Who will take care of my house?” You also may want to find out what aspects of care your insurance provider will cover. In addition, you may want to ask yourself questions such as “How do I want to spend my final days?” and “Should I go into hospice care?” Below are a few things for you to consider:

Insurance Issues

  • Determine your insurance coverage now and going forward. Depending on your age and employment status at the time you are diagnosed, your insurance may change as your condition progresses
  • Review your private health insurance plan. If you are under age 65, this will be your primary source of coverage; private plans offer varying coverage, especially concerning services such as hospice care. Most plans cover nursing homes, assisted-living centers, and home care to some degree
  • Look into Medicare and Medicaid. Even if you’re not eligible yet, you should get familiar with what Medicare and Medicaid cover:
    • Medicare offers basic healthcare benefits to persons over age 65 as well as to those who have received Social Security disability benefits for at least 2 years
    • Medicare covers hospice for persons with life-limiting illnesses
    • Medicaid provides coverage for low-income adults, including older or disabled persons. Eligibility criteria vary from state to state. Most state Medicaid programs include hospice benefits
  • Consider Social Security Disability Insurance. Some people living with ILD may find that they need to discontinue working before planned retirement and seek to go on disability. This form of long-term disability is called Social Security Disability Insurance. This requires substantial medical evidence demonstrated by your healthcare provider(s)

Financial and Legal Issues

It may be a good idea to get your financial and legal paperwork in order. This is a good time to make sure your wishes have been captured accurately with your financial and/or legal advisor as appropriate. It’s also a good time to consider the wishes and needs of your family members as well. Here are some steps you should take:

  • Get your financial and personal records (bank and investment account numbers, loans, deeds, birth certificates, adoption papers, etc.) in order and store them in a safe place
  • Create a will
  • Create a living will (also known as advance directive) that outlines your end-of-life medical care choices
  • Designate a power of attorney—someone you trust to make financial and healthcare decisions for you if you are unable to
  • Consider making memorial and burial plans

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