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I’m on SSDI and have been since 2009. In 2020 my Father died which turned monthly SSI for widows. Before my Dad died he didn’t want to get my Mom diagnosed because he thought it would leave her vet depressed. The following we got my Mom diagnosed for Dementia.
Since I’m a family caregiver fulltime on SSDI how do I proceed? This is the hardest, both emotionally and physically job I’ve ever had, but it’s my Mom and I love very much . Please let me know.

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You will only be allowed to make a certain amount a year . SSD may work like reg SS for people who start collecting before full SS which now for those born around 1960 and up is 67*.

"If you are younger than full retirement age and earn more than the yearly earnings limit, we may reduce your benefit amount. If you are under full retirement age for the entire year, we deduct $1 from your benefit payments for every $2 you earn above the annual limit. For 2023, that limit is $21,240."

I agree, see a Social Security or Disability lawyer.
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You are allowed to return to work consecutively for 9 months while collecting your SSDI without being penalized. You will have to see what the monthly income limit is for 2023 to ensure you don't go over the allotted amount. You are granted this right to return to work in part to see how you are managing, since SSDI is solely based and awarded on not being fully able bodied to work.

At the end of your 9 month period, a SSA case worker will re-evaluate your status. Up until now, you've passed your periodic assessment/ evaluation forms SSA has sent you to continue receiving SSDI. That means you have been able to show them you are still disabled and unable to return to gainful employment. But if you were able to work consistently for those 9 months, you run the risk of losing your SSDI. If you lose your SSDI, you have the right to appeal. However, you will have to pay for the cost of hiring an attorney, and it gets costly. When you were first granted SSDI, the court allocated funds from your back pay to pay the attorney's fee, which can't exceed 5k. This is so the attorney doesn't double dip and protects you from collecting your back pay. If you lose your SSDI, you will have to pay the attorney's full cost, and it will be more than 5k. This is because an appeal is extra time and work, and takes longer to win.

It's best to consult with a disability attorney who works solely in SSDI/SSI cases and can advise you how to proceed.

Do not trust what SSA tells you. You will be speaking to someone at lower tier level and many are poorly informed on how to advise. It is best to speak with a disability attorney as we are not privy of your case and reason why you were awarded SSDI in the first place.

This website has a wealth of information which might further help you. https://howtogeton.wordpress.com/social-security-disability/

Good luck.
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DrosieD Oct 2023
This seemed to be some useful information. Our adult daughter (who lives with us) who is on SSDI does help me with her father who has Alzheimer's. I was reluctant to add her to the VA form as an assistant caregiver. We do claim her on our taxes so either way we'd have to pay taxes on hers AND mine. Right now every little bit helps.
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Sheri, go to SSA.gov and research this question. That will help you understand your position based on actual rules and facts.
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When someone is on disability benefits they can still earn up to a certain dollar amount without it affecting their SSDI. You can probably Google to see exactly what that dollar amount is in your state.
If your mom is on Medicaid, they will allow a few hours a week for a caregiver to be paid, so you can look into that.
Also if your dad was a veteran, you can check into their aid and assistance program which will pay for some hours of caregiving as well.
Other than that since your mom has dementia she can no longer legally enter into any kind of legal contract which is what you would need for her to be able to pay you out of her own pocket, I don't know of any other way.
And you are correct when you say how very hard caregiving is. All of us who have been there done that will tell you that hands down it's the hardest job we've ever done.
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anonymous1732518 Sep 2023
Usually $2000. SS can check the balance in the account from time to time.
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I would discuss this with your SSDI caseworker.
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