Social Security increased my disabled teen's survivor benefits but terminated Medicaid - desperate for help!

This happens a lot with disabled kids on survivor benefits. The increased survivor payment likely put her over the income limit for SSI, which is why that's ending. And in most states, SSI eligibility is tied directly to Medicaid eligibility. But don't panic - you definitely have options! First, file an appeal immediately (within 10 days if possible) to keep her benefits continuing during the appeal process. Request a "reconsideration" using form SSA-561. Second, contact your state's Medicaid office directly - many states have special Medicaid programs for disabled children that don't require SSI eligibility. Ask specifically about your state's "Katie Beckett" program or the "Children's Health Insurance Program" (CHIP). These often have higher income limits than SSI-linked Medicaid.

omg the SAME THING happened to my son last year! his dad died when he was 4 and hes disabled to. when his older brother turned 18 his check went up and they cut off his medicaid to. its so messed up, why does SS think that extra money means he doesnt have autism anymore????

There's an important technical distinction to understand here. When your daughter was receiving both SSI and Survivor's benefits, a portion of the Survivor's benefits was likely being counted as income against her SSI payment (with some exclusions). Now that the Survivor's benefit has increased, it has exceeded the income threshold for SSI eligibility. What you need to know: 1. The 2025 SSI Federal Benefit Rate (FBR) is $914 for an individual, and the income limit is typically that amount plus $20 (general income exclusion). 2. For a child under 18 receiving Survivor's benefits, the benefit can be up to 75% of the deceased parent's Primary Insurance Amount (PIA). 3. When one child on a record "ages out" at 18, the benefits are redistributed among remaining eligible children, often resulting in the situation you're experiencing. For Medicaid, contact your state Medicaid office immediately and ask about "Medicaid Buy-In for Children with Disabilities" or "TEFRA" options. These programs often allow families to pay a premium to maintain Medicaid coverage for disabled children regardless of income.

u should check if your state has a spend down program for medicaid. my daughter got kicked off SSI for the same reason but we do a medicaid spend down every month. basically you pay a certain amount of medical bills each month (like a deductible) and then medicaid covers the rest. its a pain to deal with the paperwork but at least she gets coverage

I know exactly what you're going through! Have you tried calling the SSA to explain the situation? I spent WEEKS trying to get through to someone at Social Security about my son's benefits last year. Constant busy signals, disconnected calls, and when I finally got through, I was on hold for 3+ hours only to be told I needed to call back and speak with a different department. I finally tried this service called Claimyr that helped me get through to an actual SSA agent in under 20 minutes. They basically call SSA for you and hold your place in line, then call you when they reach an agent. Saved me hours of frustration. Their website is claimyr.com and they have a video showing how it works: https://youtu.be/Z-BRbJw3puU Once I actually got to TALK to someone at SSA, they explained the Medicaid options much better than the letters did. Definitely worth getting them on the phone while you pursue the appeal.

HAS ANYONE ACTUALLY TRIED APPEALING THESE DECISIONS?? I went through the SAME THING with my disabled son and SSA denied EVERY SINGLE APPEAL I filed!!! The system is RIGGED against disabled kids. They gave him more money with one hand and took away his healthcare with the other. We ended up in MASSIVE medical debt even though his condition didn't change at all. I'm still fighting with them 2 years later!!!

I used to work as a benefits counselor, and this is a common issue. What's happening is called the "SSI offset" - when survivor benefits increase, SSI decreases dollar-for-dollar (minus some exclusions). Here's what you should do immediately: 1. File the SSA-561 reconsideration request for the SSI termination within 10 days to keep benefits during appeal 2. Contact your state Medicaid office about what's called "1619(b) status" - if your daughter was eligible for SSI due to disability (not just income), she might qualify for continued Medicaid even without SSI payments 3. Ask specifically about the "Medicaid Buy-In for Workers with Disabilities" program - some states extend this to minors 4. Look into whether your state has expanded CHIP coverage for disabled teens 5. Contact your local MAXIMUS office (they administer various disability work incentive programs) for free benefits counseling The most important thing is to keep Medicaid continuous - gaps in coverage can create problems with reestablishing care relationships.

i think u can also try applying for medicaid thru the marketplace if u go to healthcare.gov they have special options for ppl who lose coverage

I've been following this thread, and I wanted to circle back - did you manage to file the appeal yet? Remember that if you request the continuation of benefits during appeal (by checking that box on the SSA-561 form), they should continue her Medicaid during the appeal process. This buys you time to explore the state-specific programs others have mentioned. Don't wait on this - the 10-day window for continued benefits during appeal is crucial.