Once you are approved for Social Security disability benefits, you will still have important responsibilities and obligations to Social Security. It is very important to understand the approval process so you get the most out of your benefits, but just like the application process, there are many myths and misconceptions that negatively impact families even after they get approved for benefits.  

1. You are approved for disability for life. 

Your Social Security disability claim will be reviewed at least once during your life. With a diagnosis like HD, your claim should only be reviewed every 5-7 years because your condition is not expected to improve, but many individuals with HD are put in the 3 years, might improve, review category. Click here for more information.

2. You are the only person in your family who will receive benefits. 

If you are approved for SSDI benefits (not SSI), and you are receiving more than $1,000 per month, then your dependent children and possibly your spouse may be eligible for benefits too. Monthly child benefits last until your last child turns 18 and has graduated from high school. This means if you received a lump sum back payment then your eligible children should receive back payments too. You will need to complete a brief interview with Social Security after you are approved to get child benefits set up. 

3. You cannot work and receive benefits. 

You are able to work and receive Social Security benefits as long as you abide by Social Security’s strict earning criteria. If you know you want to work after getting approved for benefits, your safest option will be to utilize Social Security’s Ticket to Work Program or the Work Incentives Planning and Assistance Program (WIPA) through local organizations so you can have help managing your benefits. 

If you work over the strict earnings limit, your benefits could stop and you may have to pay Social Security back thousands of dollars – this happens a lot with HD families. This is called an overpayment and is often devastating for individuals and families because they lose their Social Security disability benefit and now owe SSA thousands of dollars. Click here for more information.

4. You do not pay taxes on Social Security benefits.  

Your disability benefits can be taxed if your income exceeds certain limits: 

  • Single: make more than $25,000 per year 
  • Married: make more than $32,000 per year 

This means that most married individuals will have their Social Security disability benefits taxed.  

5. You will manage your own disability check. 

Because of the cognitive decline component of HD, there are many HD impacted individuals who cannot responsibly handle their finances, which is something Social Security evaluates during the application process. Many individuals with HD who are approved for disability benefits are required to have a Representative Payee. This is someone who will manage benefit payments on your behalf and make sure the benefit money is used for your care. This person is often a spouse or other relative. Click here to find out more information about the program, duties, and responsibilities.