Financial and Legal Planning

If you are working when diagnosed with ALS, it can be difficult to decide when and how to tell your employer about your diagnosis. Your relationship with your employer and the type of work you are doing are important factors to consider, and it is important to understand your work-related benefits before leaving your position so that you know what questions you may need to ask.  

Disability insurance is a safety net offered by many employers as part of your employment benefits that can help support you financially in the event you cannot work because of a non-occupational injury or illness. Short term disability benefits will typically continue for a period around 3-6 months, and supplements between 40-70% of your salary. Conversely, long-term disability typically begins after the short-term policy has elapsed and can last for a certain number of years and can cover around 60% of a salary. Employer based disability insurance benefits differ, it is important to review your policy for specific information about your plan. 

Currently the best tool to distinguish between SALS and FALS is the family history. A neurologist or genetic counselor will ask whether anyone else has ever been diagnosed with ALS, and if anyone else in the family had progressive walking or speech problems. If so, they will likely ask additional questions to see if the health problems were related to ALS or another cause. They will also inquire about the ages that family members passed away to see if any close relatives passed away at a young age, meaning that a long health history is not available. It's very common to have limited information on one's family, but most families can still be reassured as the majority of instances of ALS are not hereditary. Older relatives are often good sources of family history information, and medical records can often be obtained with the help of a hospital's medical release form.

The Family and Medical Leave Act (FMLA) entitles eligible employees of covered employers (all business with 50 or more employees at sites within 75 miles of on another) to take unpaid job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. You can find more information about FMLA here: https://www.dol.gov/agencies/whd/fmla   

There are laws in place that provide some protection if you choose to continue working. The American with Disability Act (ADA) makes it unlawful to discriminate in employment against a qualified individual with a disability. You can find more information here: https://www.eeoc.gov/publications/ada-your-employment-rights-individual-disability  

Social Security Disability Income (SSDI) provides monthly income for people unable to work due to a disability. These are the funds you have been contributing to over the many years you have worked. If you meet the qualifications for work credits and eligibility, a diagnosis of ALS is presumed eligible for SSDI, even if you are under the age of 65. It is a federal program and the amount of money you receive each month depends on how much you earned and paid into Social Security over time. If you have worked at least five of the last 10 years and paid taxes for 40 quarters (ten years), or more, you will likely qualify.  

When you apply for SSDI, you also automatically apply for Medicare, which is a national health insurance program for seniors and some disabled people. If you qualify for SSDI, you will automatically receive Medicare disability benefits. The ALS Disability Insurance Access Act of 2019 eliminated the required five-month SSDI waiting period, therefore, if eligible for SSDI, benefits should be processed quickly with no waiting period. To find out if you qualify for SSDI, visit your local Social Security Administration Office, visit the Social Security website or call 1-800-772-1213. When you call, be sure to have on hand your social security number, address, birth certificate, names and addresses of hospitals and physicians, medications, marriage information, dependent children’s names, addresses and social security numbers, employers over the last 15 years, and income.  

If you do not qualify for SSDI due to lack of work credits, you may be able to qualify for Supplemental Security Income (SSI)/Medicaid. When you apply for SSDI, you are automatically screened for SSI benefits. SSI is a federal program that pays benefits to individuals with limited income and resources. Medicaid is also based on financial need and provides healthcare benefits to those that qualify.  

Important Resources and Websites:  

• Social Security Website: The United States Social Security Administration | SSA  
• Medicare Website: Welcome to Medicare | Medicare  
• A person who is denied benefits from Social Security has appeal rights with strict time limitations. Call the Social Security Administration Office for questions. 

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.

Estate planning is the process of anticipating and arranging for the management and disposal of a person's estate during the person's life in preparation for a person's future incapacity or death. The planning includes the bequest of assets to heirs, loved ones, and/or charity, and may include minimizing gift, estate, and generation-skipping transfer taxes. Estate planning includes planning for incapacity, reducing or eliminating uncertainties over the administration of a probate, and maximizing the value of the estate by reducing taxes and other expenses. The ultimate goal of estate planning can only be determined by the specific goals of the estate owner, and may be as simple or complex as the owner's wishes and needs directs.