Ongoing medical care for individuals diagnosed with ALS can sometimes place a financial burden on the patient and their family that may feel stressful and overwhelming. If financial strain is a concern for you and your family, there are options available to lessen this burden. Governmental assistance benefits exist that you may be entitled to, in addition to services offered by local ALS support organizations. Here are a few commonly used options to get you started.
Once diagnosed with ALS, you are eligible for Social Security Disability benefits as well as Medicare. It is good to review your current insurance benefits, and compare them to Medicare coverage before applying, to determine what option best fits your needs. With an ALS diagnosis, your application should be expedited, meaning you should receive a decision regarding your application within a couple of weeks, as a part of the Compassionate Allowances program.
In regards to applying for these benefits please be aware of the following points:
- If you are working and your gross monthly income is over $1,090 the Social Security Administration (SSA) will not accept an application as you will not be considered disabled by earnings criteria. Both earnings and disability diagnosis criteria need to be met to initiate an application.
- While your application should be expedited with a diagnosis for ALS this will not affect the standard 5 month waiting period for benefits to start. Social security disability benefits are not retroactive for this 5 month waiting period though you may qualify for Social Security Income (SSI) for this period if you meet the financial criteria.
- Given a diagnosis for ALS you will begin receiving Medicare coverage the same month you begin receiving social security disability. Typically there is a two year waiting period which is waived with a diagnosis for ALS. You will receive Medicare Part A automatically, but you will need to sign up for Part B. The Part B premium will be deducted from your monthly social security disability benefit check. If you have questions about this it is recommended you contact SSA http://www.ssa.gov/agency/contact/phone.html or the Medicare/Medicaid Assistance Program (MMAP) to speak with a MMAP counselor http://mmapinc.org/
To learn more about presumptive disability for people with ALS, visit http://www.alsa.org/als-care/resources/publications-videos/factsheets/new-social-security-rules.html.
For more information on Social Security and ALS, check out the fact sheet provided by alsa.org (http://www.alsa.org/als-care/resources/publications- videos/factsheets/professionals-guide-govt-benefits.html).
You can apply for Social Security Disability benefits online at http://www.socialsecurity.gov/applyfordisability/.
Disability Planner: Family Benefits
This tool from the Social Security Administration will help you come up with a plan for the best way to use your Social Security disability benefits.
Research shows that ALS occurs more frequently in veterans than in the general population. As a veteran, you are eligible for benefits through the Veterans Health Administration. It is recommended that you apply as soon as possible after diagnosis, as benefits are retroactive to the date of application.
The application for benefits consists of filling out the appropriate form and submitting any required documentation. The forms are:
- Health Care – https://www.1010ez.med.va.gov/sec/vha/1010ez/
- Service Connection – http://www.vba.va.gov/pubs/forms/VBA-21-526-ARE.pdf
For assistance with completing the application process, we recommend that you engage the assistance of a service officer through a Veteran Service Organization (VSO), such as Disabled American Veterans (DAV), Paralyzed Veterans of America (PVA), the American Legion, Veterans of Foreign Wars (VFW), or Veteran’s Administration (VA).
Here are a few local options:
U.S. Department of Veteran’s Affairs Detroit:
Disabled Veterans of America Detroit:
Paralyzed Veterans of America:
A veteran with a diagnosis of ALS may also make use of their local county veterans service officer for assistance in applying for VA benefits. Here is a link to the Michigan Veterans Affairs Agency, http://www.michiganveterans.com/ and a directory of their county representatives,
Other VA Resources:
Department of Veterans Affairs’ Guide to Long Term Services and Supports
This website provides an overview of VA long-term services and supports.
Disabled Veterans exemption for Michigan Property Taxes
Services provided by the following organizations include a loan closet, containing scooters, wheelchairs, communication devices and more, financial assistance for respite care, and support groups.
ALS Association Local Chapter
ALS of Michigan
ALS Guardian Angels
Potential financial assistance for people living with ALS
Go Fund Me
www.gofundme.com/?utm_campaign=Emails&utm_source=sendgrid.com&utm_medium=email Some have created Go Fund Me accounts as a means of obtaining financial assistance.