To make things easier to get a handle on, below is a checklist of what you need to do to plan for a future with ALS.
Health insurance can be complicated. Finding out exactly what is covered, and making sure you get all the benefits you’re due, can require some research and persistence on your part.
If you have any questions about your coverage, contact the insurance company directly and ask specific questions. 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 case managers; a case manager 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 is 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.
If you qualify for Medicare, the standard 24-month waiting period is reduced to 5 months for ALS patients. However, it’s still important to start the process quickly. For help navigating Medicare, reach out to the The Patient Advocate Foundation ALS Medicare Resource Line.
At some point, ALS will probably make it more difficult 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 used 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, all employers with at least 15 employees cannot 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 that are needed 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 are not considered “reasonable”―that is, if they are 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 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. There is usually a five-month waiting period for Social Security Disability, and you can’t apply until after you leave your job due to disability.
When you apply for Social Security Disability, you are also screened for Supplemental Security Income (SSI). SSI is designed to help people who are disabled and who have low income. It is added to whatever other benefits or income you have to make sure you earn enough to live off of. People who qualify for SSI may also be eligible for food stamps and government-provided health insurance.
If you are deemed eligible for SSI, ask whether you can get a “Presumptive Disability Decision.” A Presumptive Disability Decision could help you get benefits more quickly.
There are several legal documents that everyone (not just ALS patients) may find helpful for planning how finances and health care are handled after they are 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 are 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 are 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 similar to 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 allows your assets to go directly to your heirs without going through probate, saving time and money.
- 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 is best to talk with an attorney to make sure the documents are legally valid. A financial expert can also help you structure things in a way that minimize the tax burden to you or your heirs.