Insurance and Financial Information
Insurance and Financial Information

Insurance and Financial Information

An ALS diagnosis can feel very overwhelming – and seems to come with an equally overwhelming to-do list. There are people to tell, big decisions to make and plans to put in motion.

We’ve gathered some information and resources to help you plan for your future living with ALS.


Health insurance can be complicated. Finding out exactly what’s covered and making sure you get all the benefits you’re due can require some research and persistence.

If you have specific questions about your coverage, contact your insurance company directly and ask. Make notes of when you contact them, the name of the representative you talk with and the answers they give you.

Ask if your policy allows for a case manager who can be helpful in getting you the answers you need and dealing with other people within the insurance company on your behalf.

Some things you need to know about your health insurance policy:

  • The amount of the annual deductible.
  • Whether there’s an out-of-pocket expense limit, and how your coverage changes if you reach that limit.
  • Whether you need pre-authorization for any services.
  • Whether the plan covers durable medical equipment (DME), such as ventilators or wheelchairs.
  • What prescription drug coverage you have.
  • Whether your plan includes home health coverage, including a home health aide.
  • Whether your plan covers hospice care.

The ALS Coverage Resource Guide is an essential tool for advocates working to improve health care access for individuals living with ALS. This guide provides valuable information on the various health care needs of people living with ALS, including treatments, services, and equipment. The guide offers evidence-based data to help advocates educate health insurance plan designers and administrators about the importance of covering these necessities. It highlights the common barriers people with ALS face in accessing care and the detrimental effects of insurance denials. These denials can significantly impact the health and quality of life of those living with ALS, making timely access to care crucial. By equipping advocates with solid evidence, this guide aims to promote policy changes that ensure better health outcomes and reduced care delays for people living with ALS. Additionally, it includes practical tips for engaging with health insurers, strategies to prevent insurance denials, and best practices for appealing them. For more detailed guidance, contact the ALS Association at


At some point, ALS will probably make it more difficult for you to do your job, or at least require you to change the way in which you do it. For example, a wheelchair may be needed to improve mobility, or special devices might be needed to help you speak clearly.

You may be worried that disclosing your diagnosis to your employer might cause you to lose your job. However, by law, employers with 15 or more employees can’t discriminate based on disabilities and must make “reasonable accommodations” to help you continue working.

These accommodations may include making physical changes to the workplace, such as adding a wheelchair ramp. They can also involve providing special equipment or devices to help you continue doing your job or changing the way your work is done.

An employer does not have to make accommodations if they aren’t considered “reasonable” – that is, if they’re prohibitively expensive or if they fundamentally change the nature of the position or the business itself.

If you are ever discriminated against based on a disability, you can file an ADA (Americans with Disabilities Act) complaint with the U.S. Department of Justice.

If you need to take time off work due to ALS, the Family and Medical Leave Act (FMLA) requires businesses with at least 50 employees to offer at least 12 weeks of unpaid leave to deal with a serious illness. This law applies both to the person with the illness and to any family member who needs time off to help care for them.


If you become unable to work due to ALS symptoms, you may be eligible for disability benefits from your employer or from private disability insurance if you have it. You may also be eligible for Social Security Disability benefits.

When you apply for Social Security Disability, you’re also screened for Supplemental Security Income (SSI). SSI is designed to help people who are disabled and have low income.

SSI is added to whatever other benefits or income you have to make sure you earn enough to live. People who qualify for SSI may also be eligible for food stamps and government-provided health insurance.

If you’re deemed eligible for SSI, ask whether you can get a Presumptive Disability Decision, which could help you get benefits more quickly.

Legal Documents 

Several legal documents can help everyone – not just people living with ALS – plan how finances and health care are handled after they’re no longer able to manage such things themselves.

  • Durable Power of Attorney. A durable power of attorney document designates who you want to handle your finances and/or your health care decisions when you’re no longer able to communicate or make those decisions yourself.
  • Medical Power of Attorney. This type of power of attorney document grants a specific person of your choice the power to make medical decisions on your behalf if you’re unable to communicate or make those decisions yourself.
  • Advance Directive. An advance directive specifies the medical treatments and care you wish to receive if or when you are no longer able to communicate your wishes. For example, it may state that you do (or do not) want a mechanical ventilator implanted if it becomes necessary to extend your life. Advance directives are like power of attorney documents and can even be used to give someone power of attorney, but they allow you to make your own medical decisions instead of relying on someone else to decide.
  • Living Trust. A living trust allows you to transfer your financial assets and property into a trust, but still be able to manage those assets yourself during your lifetime. You can appoint a trustee to manage those assets after you pass away. A living trust often saves time and money by allowing your assets to go directly to your heirs without going through probate.
  • Last Will and Testament. This document spells out what will happen to your assets after you die. Ownership can pass to specific family members, friends or charitable organizations.

Though it’s not necessarily required, it’s best to talk with an attorney to make sure all of your documents are legally valid. A financial expert can also help you structure things in a way that minimizes the tax burden to you or your heirs.

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Insurance and Financial Information