Understanding Insurance and Benefits When You Have ALS

Navigating the maze of health insurance is challenging for anyone and can be particularly overwhelming for people with ALS.  We’ve compiled some tips and information that may help save you time and energy spent figuring out the complicated web of insurance benefits.

Questions to Ask Your Health Insurance Provider

A diagnosis of ALS can certainly be overwhelming and many ask, “where do I begin?” What will I need? What does my insurance cover? Below is a list of questions you should ask your insurer:

  • Is there an annual deductible?
  • Is there an annual out-of-pocket expense limit or maximum? If I meet my limit, does my coverage increase and to what extent?
  • Do I have a major medical plan? Is there an annual or lifetime maximum?
  • Do I need to complete any claim forms?
  • Am I subject to pre-existing condition regulations?
  • What does insurance cover/not cover for a person with ALS?
  • Does my plan cover durable medical equipment?
  • Does my plan cover prescription drugs?
  • Does my plan cover home health coverage? Is there a preferred home healthcare agency I must use?

Social Security Disability Insurance (SSDI)

When you are diagnosed with ALS, making a decision to stop working and apply for SSDI may be difficult, but the process for applying for it and Medicare should be relatively easy.  You can file for benefits once you are no longer able to work, or if your current Substantial Gainful Activity (SGA) is below the allotted amount.  The easiest way to file for SSDI is to do so online at http://socialsecurity.gov.  You will need the names and addresses of your doctors, as well as a very brief outline of the work you have done in the last 15 years.  If you are unable to apply online, you can call the Social Security Administration at 1-800-722-1213 or you can apply in person at your local social security office.  Because ALS is on the Social Security Administration’s list of Compassionate Allowances, Social Security will grant you disability status immediately once an application is filed.  There is a full five-month waiting period, so even though Social Security will award disability status immediately, no monetary benefits are paid until after there has been no work for five full months.  Once you are approved for benefits and the full five month waiting period has passed, you will receive monthly monetary payments for you, and in most cases, your minor children and a spouse who cares for your children under age 16.  Your Social Security statement and an on-line benefits estimator can be obtained at http://ssa.gov/myaccount.

Supplemental Security Income (SSI)

Supplemental Security Income provides cash to meet basic needs for food, clothing and shelter to those age 65 and older, blind, or disable who have little or no income.  Individuals and their children may be eligible for SSI even if they have never worked or have an insufficient insured status for SSDI.  SSI is a Federal income supplement program funded by general tax revenues, not Social Security taxes.  Each individual who applies for SSDI is also screened for SSI benefits.  SSI payments may be available during the usual 5-month waiting period before SSDI cash benefits begin. Those eligible for SSI may be automatically eligible for Medicaid benefits.

Medicare and Medicaid

Medicare is a federal health insurance program administered by the Centers for Medicare and Medicaid Services (CMS).  Medicare is available to persons of age 65 and older (and their spouses) and persons eligible for SSDI.  Medicare Part A (hospital insurance) helps pay for care in hospitals as an inpatient, skilled nursing facilities, hospice care, and some home healthcare. This coverage is free to SSDI recipients.  Part B (medical insurance) helps pay for doctors’ services, outpatient hospital care, and some other medical services that Part A does not cover, such as physical and occupational therapy, and some home healthcare. Part B helps pay for these services and supplies when they are medically necessary.  There is a monthly premium for this coverage.  If an individual is also a Medicaid recipient, their monthly premium for Medicare may be paid by their Medicaid benefits.  Please refer to the official Medicare website for the most up-to-date information at http://medicare.gov/Coverage/Home.asp or call 1-800-MEDICARE.  Medicaid provides health coverage for low-income people, families and children, pregnant women, the elderly and people with disabilities.  Federal and state governments jointly fund Medicaid.  For more information on Medicaid contact your state’s Medicaid program.   If you live in Missouri visit https://mydds.mo.gov and if you live in Illinois visit http://illinois.gov/hfs.

For a person with ALS, the most important part of healthcare planning is selecting the best health insurance for their needs.  Discussing health options with an insurance counselor is a great way to think through and plan for your needs to find the most appropriate coverage when you need it.  Your State Health Insurance Counseling Program has expert volunteers who can assist you free of charge.  Go to https://www.medicare.gov/contacts/#resources/ships for more information and as always you can contact The ALS Association St. Louis Regional Chapter through our website or by calling us at 314-432-7257.

The information from this blog post was excerpted from Living with ALS Resource Guide 5: Understanding Insurance and Benefits When You Have ALS.


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