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!

So glad to hear you're making progress! The "Medicaid Working Disabled" program is exactly what saved us when my daughter went through this transition. Just a heads up - the application process can take 30-45 days, so make sure you ask about retroactive coverage to avoid any gaps. Also, when you do get through to SSA, ask them about the "Medicare Buy-In" option for when his Medicare kicks in after the 24-month waiting period. With his medication costs, having both Medicare and Medicaid will be crucial for full coverage. You're doing an amazing job advocating for your son - this system is so complex and most people don't realize these programs exist until they're in crisis mode like you were!

I'm so relieved to see this update! Your experience highlights something really important - the frontline staff at regular Medicaid offices often don't know about these specialized disability transition programs. It's frustrating that you had to go through so much stress before finding someone who actually understood your situation. For anyone else reading this thread who might face a similar DAC transition in the future, Aurora's approach is perfect: contact your state's Disability Rights office or Protection & Advocacy organization FIRST. They have specialists who deal with these exact situations regularly and can save you weeks of calling around. Also, kudos to your neurologist for stepping up with the emergency samples and patient assistance programs. Having a medical team that understands the insurance/benefits maze makes such a huge difference when you're dealing with chronic conditions requiring multiple medications. Keep us posted on how the Medicaid Working Disabled application goes - your experience could really help other families who end up in this same situation!

I'm so glad to see this thread and Aurora's positive update! As someone who works with families navigating disability benefits, I want to emphasize a few key points that came up here: 1. The DAC-to-Medicaid transition issue is incredibly common but poorly communicated by SSA. Many families get blindsided by this exactly like Aurora did. 2. The 24-month Medicare waiting period is one of the cruelest gaps in our system - people with the highest medical needs are left without coverage right when their income slightly increases. 3. The specialized programs mentioned here (Medicaid Working Disabled, WIPA, CILs, Protection & Advocacy) are lifelines that most people don't know exist until they're in crisis. For anyone bookmarking this thread for future reference, I'd add: document EVERYTHING during these transitions. Keep copies of all notices, applications, and phone call summaries. The appeals process can be lengthy if something goes wrong, and having a paper trail is crucial. Aurora, you did an amazing job advocating for your son. Your persistence and willingness to seek help from the right specialists made all the difference. Thank you for sharing your experience - it will definitely help other families facing this same nightmare scenario.

As a newcomer to this community, I'm incredibly grateful to have found this thread! Reading through Aurora's situation and everyone's helpful responses has been both educational and reassuring about the supportive nature of this community. I'm currently helping my elderly parents navigate their Social Security benefits, and while we don't have the DAC situation, I had no idea how complex these transitions could be. The fact that Aurora went from panic to having a clear path forward in just a few days thanks to everyone's advice is amazing. A few things I'm taking away from this discussion that might help others: - Don't accept "no options" as a final answer from frontline staff - Disability Rights offices and Protection & Advocacy organizations seem to be the real experts - Having medical providers who understand the benefits system is crucial - There are way more specialized programs available than most people realize Aurora, I'm so glad you found the help you needed! Your willingness to share updates will definitely help other families who find themselves in similar situations. Thank you to everyone who contributed their knowledge and experiences - this is exactly the kind of community support that makes a real difference in people's lives.

As someone new to this community, I'm amazed by the wealth of knowledge and support shown in this thread! Aurora's situation really highlights how navigating the disability benefits system can feel overwhelming, especially when facing unexpected changes like the DAC transition. What really stands out to me is how Aurora went from panic mode to having concrete solutions within days, all thanks to this community's guidance. The key seems to be knowing that specialized resources exist - like WIPA counselors, Disability Rights offices, and the various Medicaid programs that regular staff might not know about. I'm taking notes on all the programs mentioned here for future reference. It's concerning but important to know that these benefit transitions can create coverage gaps, and that you really need to advocate strongly and ask for supervisors who understand disability-specific programs. Aurora, I'm so glad you found the right help and that your son's neurologist stepped up with emergency samples and patient assistance programs. Your experience is going to help so many other families who might face similar situations. Thank you for sharing both the scary parts and the positive resolution - it gives hope that even complex benefit issues can be solved with the right resources and persistence!

As a newcomer to this community, I'm both heartened and overwhelmed by Aurora's story and everyone's incredibly helpful responses. Reading through this thread has been eye-opening about just how complex the disability benefits system really is - and how critical it is to have knowledgeable advocates and community support. What strikes me most is how Aurora's situation went from seemingly impossible to manageable once she connected with the right specialists. The distinction between regular Medicaid workers and those who specialize in disability transitions seems absolutely crucial. It's scary to think how many families might give up or fall through the cracks simply because they don't know these specialized programs exist. I'm bookmarking all the resources mentioned here - WIPA, Disability Rights offices, Centers for Independent Living, Protection & Advocacy organizations. As someone who may need to navigate similar systems in the future, having these contact points could be lifesaving. Aurora, thank you so much for sharing not just your initial panic but also your updates and solutions. Your persistence and willingness to document this journey is going to help countless other families. And to everyone who shared their experiences and expertise - this is exactly the kind of community support that makes a real difference when people are facing overwhelming bureaucratic challenges. This thread should honestly be required reading for anyone dealing with disability benefits!

As someone completely new to this community and the world of disability benefits, I'm incredibly moved by Aurora's story and the overwhelming support she received here. Reading through this entire thread has been both educational and inspiring - it's amazing how this community came together to help her navigate such a complex and frightening situation. What really strikes me is how Aurora went from complete panic about losing her son's Medicaid coverage to having multiple concrete solutions within just a few days. The difference between talking to regular staff versus specialists who understand disability transitions seems to be absolutely critical. It's both reassuring and concerning that so many specialized programs exist that most people (including frontline workers) don't know about. I'm taking extensive notes on all the resources mentioned - WIPA, Disability Rights offices, Protection & Advocacy organizations, Centers for Independent Living, and all the various Medicaid programs. As someone who may face similar challenges with family members in the future, having this roadmap could be invaluable. Aurora, thank you for your courage in sharing both your initial terror and your positive updates. Your willingness to document this journey is going to help so many other families who find themselves in similar situations. And to everyone who contributed their knowledge and experiences - this is exactly what community support should look like. You literally helped prevent a family from facing a medical coverage crisis. This thread should be pinned as a resource for anyone dealing with DAC transitions!