Coping Financially

Know what insurance you have (or can get).
- You should be eligible for Social Security Disability (SSD) when your ALS prevents you from working.
- Once you have SSD, you automatically are eligible for Medicare (no waiting period for people with ALS).
- You have to meet income and asset requirements to qualify for Medicaid, but note that there are ways to shelter some of your income and assets to qualify for home care under Medicaid, especially if you're married.
- For more info, see the Insurance page.
Caregivers who stop working to care for someone with ALS may be eligible for benefits under the Family Medical Leave Act. https://www.ny.gov/programs/new-york-state-paid-family-leave
Grants are available from a number our sources.
- In the Rochester, NY area, both of these organizations have grant programs:
  - The local chapter of the ALS Association ( http://webuny.alsa.org/site/PageServer/?pagename=UNY_8_patient_family_services )
  - Hearts for ALS ( http://heartsforalsny.org/about/ )
- HealthWell Foundation helps pay health care premiums, deductibles, copays: https://www.healthwellfoundation.org/
- Team Gleason provides grants, primarily for AAC (Augmentative and Alternative Communication), but also for certain wheelchair features not covered by insurance, and for home automation technology: https://teamgleason.org/pals-resource/
- Some possible sources for grants for a wheelchair van include:
  - National Association for Vehicle Accessibility: https://novafunding.org/grant-program/
  - Various organizations in NY state: https://www.themobilityresource.com/financing-handicap-accessible-vehicles/state-grants/new-york-disability-grants
Take advantage of loan closets to borrow durable medical equipment.
- The local chapter of the ALS Association in Rochester, NY runs one in partnership with Monroe Wheelchair, and another with Westside Medical Supply, but also has access to closets in Syracuse and Buffalo. Contact your local chapter for help. http://webuny.alsa.org/site/PageServer/?pagename=UNY_8_patient_family_services
- Here are lists of other loan closets in the Rochester, NY area:
  - https://www.urmc.rochester.edu/MediaLibraries/URMCMedia/Geriatrics/MonroeCountyDMELoanClosets-Jan-2017.pdf
  - http://www.eldersource.org/documents/LoanClosetList_001.pdf
Run a fund-raiser.
- Set up a GoFundMe page, then use social media, email, and/or word-of-mouth to let everyone know about it. https://www.gofundme.com/ We used this to help raise money to pay for our wheelchair van.
- Run a fund-raiser. Hearts for ALS can help. http://heartsforalsny.org/about/
Loan payment insurance
- When you take out a loan (car, home, etc.), you might be able to get "life insurance" that pays off the loan if the person taking out the loan dies. This could be worthwhile if:
  - The person taking out the loan is the PALS
  - The person taking out the loan doesn't have to have a medical exam (if the insurer knows he/she has ALS, they might deny the insurance)
  - The premiums are worth it
Charity Transportation
- Wings Flights of Hope (free private airplane flights): http://www.wingsflight.org/
  - Who they fly: http://www.wingsflight.org/about/who-we-fly/
  - Where they fly: http://www.wingsflight.org/about/where-we-fly/