What You Need To Do Soon After Diagnosis

After the initial diagnosis of ALS, there may be an overwhelming cloud of despair. Despite this emotional difficulty, there are still some very practical issues that must be addressed quickly.  As soon as you are emotionally ready, you will need to address how you will be able to meet financial challenges.  Depending on your physical status and financial status, you may or may not continue to work.  Regardless, soon after your diagnosis, you will need to know what insurance policies you have and what benefits are available.  Below, I have tried to describe my best recollection of what we encountered.  You will still need to personally confirm how this information can be applied to your own situation.  Hope that you find this helpful.

Private Disability

If you have private disability benefits, I suggest that you file your claim as soon as possible.  Some insurance companies have a pre-set number of days, for example, 30, 60, 90, or 180 days called the “elimination period,” which is required prior to disbursing money.  In other words, you will need to have financial resources separate from the disability initially.  Policies vary, so contact your agent as soon as you can, so they can help you as soon as possible and collect any information that is necessary to initiate a claim, such as a physician statement.

Medicare Disability and Medicare Health Care Insurance

I would also suggest that you apply for your Medicare disability benefits, which include disability payments and Medicare health care coverage, as soon as possible.  Regardless of whether you have private insurance, you will likely use your Medicare benefits.  You have paid into the system, earned them, and often times they will be used to pay the difference for what your private insurance will not pay or vice versa.  This will often depend on which is considered the primary insurance.  If you have private medical insurance and the cardholder (the person whose name the policy is under) is still working, the private insurance is typically considered the primary insurance, with Medicare being secondary.  In this situation, the private insurance will pay first, with Medicare billed as the secondary.

As of December 2012, the typical waiting period for Medicare disability benefits is a minimum of two years (http://www.disabilitysecrets.com/dnewsblog/2010/04/how-long-does-it-take-to-get-medicare.html). However, there are two exceptions. If you have renal failure or ALS they will fast-track your claim. Medicare disability payments and Medicare health care coverage begins six months after the last day of work.

Applications can be processed online, by mail, or in person by going to the Social Security office.  We found it best to go to the office since we were uncomfortable mailing in the original documents that were requested (eg. birth certificate or citizenship papers if you were born in another country).  My spouse did this for me at the office, and they verified my permission by phone.  At the office they will review the entire application, question by question.  They will also make copies of your original documents, which were required as part of the application.

You will be allowed to work while on disability with certain restrictions.  The brochure for Medicare: Working While Disabled—How We Can Help – Social Security (www.ssa.gov/pubs/10095.html) from 2013 will provide details.  In general, you will be allowed to work and earn up to $1000 per month and still retain your Social Security disability benefits. Earning more may jeopardize your benefits.

Estate Planning

Be very careful who you use, since an unethical lawyer may try to take advantage of you. Updating your trust, estate planning, will, and advanced directive may be necessary.  You may also want to review and change beneficiary designations.  If you have minor children, you may want to pick a guardian and select someone to manage your estate.  You will need to decide at what age they will take the inheritance.  Also, you will need to review and update incapacity documents to include durable power of attorney for your health care (which gives another person legal authority to make medical decisions, including life and death decisions for you if you are unable to make them for yourself).

Updating and Reviewing Other Insurances

Often times, since the spouse is the primary caregiver, illness or death to the spouse could also be financially devastating.  Most people will focus on the ALS patient.   However, it is a good idea to review the life insurance and disability policies of the spouse, as well, especially if they are the primary caregiver.  Benefit amounts on these policies may need to be increased.  Also, if financially reasonable, consider long-term care insurance for the spouse.  This way, if the spouse becomes ill, money will be available for his/her care, too.

Updating Accounts

Make a list of all your accounts, where they are located, user names, and passwords. These will eventually be necessary for your trustee or administrator.

Communication with Closest Loved Ones

Speak to your loved ones and the person assigned as your durable power of attorney for health care about your desires regarding medical decisions. This will avoid any potential misunderstandings.

You may also consider gathering your closest loved ones to share your diagnosis with them and discuss your end-of-life medical plans, if you know them.


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