Social Security switched my disabled daughter from SSI to SSDI with lower payment - how is this possible?
I'm completely baffled by what's happening with my daughter's disability benefits. She's 26 and has been receiving SSI since she was 18 due to severe developmental disabilities. Last month, we got a notice saying she's now receiving 'Social Security Disability' instead of SSI, and her monthly payment dropped by about $290! The letter mentions something about her qualifying based on my work record, but I don't understand why they would switch her to something that pays LESS. She still has the same disabilities and limited income. Has anyone dealt with this transition from SSI to SSDI (or is it DAC benefits?)? Is there some kind of offset happening? I thought SSI was the program with the strictest income limits, so I'm shocked she'd get less on a different program.
19 comments
Dyllan Nantx
the same thing happened to my son!! SSA did this to him when he turned 25. it has something to do with him qualifying on my record now that I'm getting retirement. they never explained it well but we just had to accept it. Called SSA like 17 times and gave up
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Destiny Bryant
•That's so frustrating! Did your son's payment also decrease? I'm worried about how this will affect her Medicaid coverage too. Did they at least tell you if the SSDI has different rules about working part-time? She volunteers at a sheltered workshop and gets a tiny stipend.
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TillyCombatwarrior
This sounds like your daughter may have been converted from SSI to Disabled Adult Child (DAC) benefits, which are based on your earnings record. This typically happens when a parent begins receiving Social Security retirement or disability benefits, or passes away. The payment amount is based on your earnings history rather than the federal SSI rate. Regarding the lower payment: DAC benefits aren't means-tested like SSI, but there could be a few explanations: 1. If she has other income, SSI had different exclusions than SSDI 2. The benefit amount is calculated as a percentage of your Primary Insurance Amount 3. There could be a Medicare premium being deducted if she's been eligible for 24 months Did the notice mention anything about Medicare eligibility?
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Destiny Bryant
•Thank you for explaining! The letter did mention Medicare, but it doesn't start for 2 years. I think you're right about the DAC benefits - I started receiving early retirement last fall (I'm 63). It just seems backwards that she'd get more under the "safety net" program than on my work record. Will she still qualify for Medicaid with the DAC benefits? That's critical for her healthcare.
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Anna Xian
•My son went through this last yr and lost his Medicaid for 3 months!! Its a nightmare, you need to get intouch with ssa RIGHT NOW and ask about the "pickle amendment" which can protect medicad eligibility when switching from SSI. But goodluck getting anyone at ssa to pickup the phone lol
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Jungleboo Soletrain
Your daughter is most likely receiving what's called DAC (Disabled Adult Child) benefits now, which are based on YOUR work record instead of being needs-based like SSI was. The good news is that DAC benefits don't have the strict resource limits that SSI has - she can have more in savings without losing benefits. The bad news is that the payment might be lower depending on your earnings history. But there are important protections you need to know about: 1. Ask SSA about "Section 1634(c)" which can protect Medicaid eligibility 2. If her TOTAL benefit is now lower, she might qualify for continued SSI at a reduced rate 3. DAC benefits have different rules about work - the earnings limits are higher than SSI She might actually be better off in the long run with DAC benefits, but you need to make sure the transition doesn't mess up her healthcare coverage.
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Rajan Walker
•Is section 1634(c) the same as the PICKLE ammendment? I'm so confused by all these rules and sections!
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Nadia Zaldivar
I went through this NIGHTMARE when my sister transitioned from SSI to DAC benefits when our mom retired. Was on hold with SSA for 3 HOURS trying to get answers!!! After getting disconnected TWICE, I finally discovered a service called Claimyr that got me connected to a rep in 20 minutes. They patched me through to SSA's phone system but skipped the hold time somehow. Their website is claimyr.com if you want to check it out - they have a video demo at https://youtu.be/Z-BRbJw3puU showing how it works. The SSA rep explained that my sister needed special paperwork to keep her Medicaid when switching to DAC benefits. Make sure you specifically ask about "Medicaid continuation under 1634(c)" - most frontline workers don't know about it unless you mention it by name!
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Destiny Bryant
•Thank you so much for the tip about Claimyr! I've been trying to get through to SSA for days with no luck. I'll definitely check out the service. Did your sister end up keeping her Medicaid? That's my biggest concern right now.
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Nadia Zaldivar
•Yes, she kept Medicaid but only because we filed the right paperwork! Make sure you specifically ask about the 1634(c) provision when you speak with them. The initial representative didn't know what I was talking about, but when I insisted, they transferred me to someone who understood. Without Medicaid continuation, my sister would have lost coverage until Medicare kicked in 24 months later.
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Lukas Fitzgerald
This is a common situation that creates a lot of confusion. Your daughter has likely been converted from SSI to what's called DAC benefits (Disabled Adult Child, also sometimes called CDB - Childhood Disability Benefits). Here's what's happening: - DAC benefits are available to adults who became disabled before age 22 - When you started receiving retirement benefits, that "triggered" her eligibility on your record - The benefit amount is calculated as a percentage of your Primary Insurance Amount (PIA) - If your earnings history doesn't result in a high PIA, her benefit could be lower than the federal SSI rate The good news is there are protections to prevent loss of Medicaid. Your daughter should automatically qualify for what's called "mandatory continuation" of Medicaid under Section 1634(c) of the Social Security Act. This ensures people who lose SSI due to receiving Social Security benefits can keep their Medicaid. I recommend: 1. Contact your state Medicaid office to verify her coverage continues 2. Request a benefit verification letter from SSA showing her new status 3. Calculate whether she might still qualify for some SSI to supplement the DAC benefits
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Destiny Bryant
•Thank you for this detailed explanation! I'll definitely follow your suggestions. Do you know if there's a specific form I need to request from SSA regarding the Medicaid continuation? And should I contact SSA first, or go directly to our state Medicaid office?
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Anna Xian
Is she on any work activity? Because if shes getting SSDI now insted of SSI the rules about working are TOTALLY different!! SSI lets you work more hours before cutting benefits but SSDI has this thing called SGA (substantial gainful activity) and if she goes over that amount even ONE MONTH they can terminate her!!! My nephew lost his benefits this way and it took 18 months to get them back!!!!
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Destiny Bryant
•Oh no, that's concerning! She only works about 6 hours a week at a sheltered workshop and makes less than $200/month. Is that going to be a problem under SSDI rules? The SSI worker always told us that was fine under their program.
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TillyCombatwarrior
•Don't worry too much about this. The SGA limit for 2025 is $1,550 per month for non-blind individuals. At $200/month, your daughter is well below this threshold. However, it's still important to report her earnings to SSA regularly, as the reporting requirements are different for DAC benefits than they were for SSI.
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Rajan Walker
my cousin gets both ssi and ssdi is that possible maybe ur daughter can get both?
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Lukas Fitzgerald
•Yes, it's possible to receive both SSI and SSDI if the SSDI payment is less than the maximum federal SSI rate. This is called concurrent benefits. If the daughter's new DAC benefit is less than the SSI federal benefit rate (which is $943/month in 2025), she might be eligible for a partial SSI payment to make up some of the difference. However, the SSI payment would be reduced by the DAC benefit amount minus any exclusions.
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Jungleboo Soletrain
One important thing no one has mentioned: when your daughter switches from SSI to DAC benefits, she'll have a 2-year waiting period before Medicare begins, but she should keep her Medicaid during this period. After the 2 years, she'll have both Medicare and Medicaid (called "dual eligible"). This is actually better coverage than just having Medicaid alone. Medicaid will then act as a secondary insurance and will cover many costs that Medicare doesn't, like certain prescriptions and long-term care services. So while the monthly cash benefit might be lower now, the healthcare coverage will eventually be more comprehensive once she has both Medicare and Medicaid.
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Destiny Bryant
•That's really helpful to know about the dual eligibility! I've been so worried about losing Medicaid coverage that I didn't consider she might end up with better coverage in the long run. The letter said Medicare would start in August 2027, which seemed so far away. Do you know if there's anything special we need to do when Medicare starts to make sure the dual coverage works properly?
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