Social Security DAC benefits terminated my son's Medicaid - need urgent help with coverage options

You need to look into the Medicare Savings Program (MSP) and Extra Help program right away. When someone transitions from SSI to DAC benefits based on a parent's work record, they typically lose Medicaid but become eligible for Medicare after a 24-month waiting period. The issue is that 24-month gap without coverage. Some states have programs to maintain Medicaid during this transition period for people in exactly your situation. It's called "Pickle Amendment" protection in some places. Call your state Medicaid office tomorrow and specifically ask about continued Medicaid eligibility for someone transitioning from SSI to DAC benefits. Mention "1619(b)" and "Medicaid Buy-In" programs as possibilities.

This EXACT thing happened with my daughter last year when my husband retired!!!! We got the same notice and I had a complete meltdown. No one at SSA warned us this would happen when they switched her to DAC benefits!!! The 24 month wait for Medicare is REAL and it's HORRIBLE. Our state had a program called "Medicaid While Working" that she qualified for even though she doesn't actually work because of her disability level. We had to submit tons of paperwork but eventually got her coverage back. DON'T take no for an answer from the first person you talk to at Medicaid. ASK TO SPEAK TO A SUPERVISOR who knows about disability transitions. The frontline workers often don't know these special programs exist!!!

This situation is unfortunately very common. When someone transitions from SSI (a needs-based program) to DAC benefits (an entitlement program based on a parent's work record), they often lose automatic Medicaid eligibility. Here are your options: 1. Apply for your state's Medicaid Buy-In program (sometimes called TWWIIA - Ticket to Work/Work Incentives Improvement Act) 2. Check if your state offers 1619(b) continued Medicaid coverage for people who lose SSI due to income increases 3. Look into Medicare Part D Extra Help for prescription costs during the 24-month Medicare waiting period 4. Contact your state's Protection & Advocacy organization - they specifically help people with disabilities navigate these transitions 5. Apply for SSDI on your son's own work record if he has any work history (sometimes even minimal work history can qualify) Don't wait to start these applications - timing is critical here.

i had the same issue with my sister when my dad started collecting SS. The medicaid workers told us flat out there were NO options and she'd have to go 2 years with no coverage. but thats complete BS! you need to talk to a benefits planner not regular medicaid people. Look up WIPA (Work Incentives Planning & Assistance) in your state, they have experts who know exactly how to handle this DAC transition issue. good luck!

Cant anyone at social security help with this?? I swear every time something changes they mess everything up!!! I've been waiting 3 weeks to talk to someone about my husbands disability application and they keep disconnecting me. The whole system is designed to make us give up I think.

One more critical piece of information: contact your son's doctors, especially for his medications. Many pharmaceutical companies have patient assistance programs that provide free or heavily discounted medications to people without coverage. His neurologist and psychiatrist have likely dealt with this situation before and can help expedite these applications. Also, I want to clarify something important - even though your son is getting DAC benefits, he may still qualify for Medicaid under different eligibility criteria. The termination notice is specifically ending his SSI-linked Medicaid. You need to submit a new Medicaid application under your state's disability criteria.

my cousin went thru this last year the biggest problem is that regular medicaid workers DONT know about the special programs!! u have to specifically ask for someone who handles disabled adult transitions or medicaid buy-in programs. dont give up!!!

If you're having trouble navigating this on your own, consider contacting your local Center for Independent Living (CIL). These are federally funded organizations specifically designed to help people with disabilities access benefits and navigate transitions like this. Also, when your son does become eligible for Medicare after the waiting period, make sure to look into Medicare Special Needs Plans (SNPs) which are designed for people with chronic conditions like seizure disorders. They typically offer better prescription coverage and specialist networks than standard Medicare plans.

UPDATE: I wanted to thank everyone for the amazing advice! I contacted our state's Disability Rights office yesterday, and they connected me with a benefits specialist who knew exactly what to do. Apparently there's something called the "Medicaid Working Disabled" program in our state that my son qualifies for even though he can't work full-time. We're submitting the application today. I also spoke with his neurologist who is providing 3 months of emergency medication samples while we sort this out, and has enrolled him in patient assistance programs for two of his most expensive medications. Still working on getting through to SSA to clarify some details about the transition, but at least I feel like we have a path forward now. Thank you all so much!