Losing Medicaid when switching from SSI to SSDI DAC benefits - need affordable healthcare options ASAP

Your daughter should qualify for Medicare after 24 months of receiving DAC benefits, but that doesn't help you now with the immediate Medicaid gap. What you need to look into is your state's Medicare Savings Program or possibly the 1619(b) Medicaid continuation provision. Many states have programs that allow people to keep Medicaid even after they lose SSI due to increased income. Also, she might qualify for Extra Help with prescription costs through Social Security. I'd recommend calling your state's disability services department immediately - they often have case managers who can help navigate this exact situation. Also check if your daughter's current healthcare providers have patient assistance programs to bridge the gap.

when my son got switched from SSI to SSDI his medicaid stopped too but we found out he could get it back by applying through the state directly not through social security. call your state mediciad office not SSA they dont handle that part. also ask about patient assistance programs from the drug companies my son gets 2 meds for free that way

You're dealing with what's known as the "Medicare waiting period gap" - it's a horrible policy flaw in the system that leaves many disabled people without coverage during the 24-month Medicare waiting period after starting SSDI (or DAC in your case). Here's what you need to do IMMEDIATELY: 1. Contact your state's Health Insurance Assistance Program (SHIP) - they provide free counseling specifically for Medicare/Medicaid issues 2. Apply for Medicaid under your state's disability-specific programs (many states have alternative eligibility pathways besides SSI) 3. If your daughter's income now exceeds Medicaid limits, look into your state's "medically needy" program or spend-down options 4. Contact the pharmaceutical companies directly - most have patient assistance programs for those who can't afford medications 5. Check if your local community health centers offer sliding-scale mental health services The most frustrating part is that SSA and Medicaid offices often don't communicate well and don't proactively tell people about these options. You have to advocate aggressively and know what to ask for.

We went through this NIGHTMARE last year with my brother. After WEEKS of calling and getting nowhere with SSA or Medicaid, we finally tried Claimyr (claimyr.com) to actually get through to a human at Social Security who could help coordinate with Medicaid. The agent we reached explained that my brother qualified for continued Medicaid under special rules and helped send the right documentation to our state Medicaid office. Check out their video about how it works: https://youtu.be/Z-BRbJw3puU Seriously saved us when we kept getting disconnected calling the regular SSA number. The agent we reached knew EXACTLY what forms to fill out for the Medicaid continuation.

wait i'm confused does DAC mean disabled adult child? i thought that was different from SSDI?? my nephew gets ssi but will he qualify for my brothers disabled adult child thing when my brother retires next year??

I'm so sorry you're dealing with this!! The system is AWFUL and they don't tell you about these gaps until it's almost too late! My daughter almost ran out of her seizure meds during our transition. One thing to check IMMEDIATELY is whether your state has the "Medicaid Buy-In" program. My daughter qualified for that even though her SSDI was too high for regular Medicaid. She pays a small premium ($57/month in our state) but it covers EVERYTHING her regular Medicaid did.

Another critical option to pursue: If your daughter was receiving both SSI and Medicaid, she may qualify for Medicaid under Section 1619(b), which allows people to maintain Medicaid eligibility even after they lose SSI cash benefits due to increased income (like from DAC). This provision was specifically created for situations like yours. To qualify under 1619(b), your daughter must: 1) Have been eligible for SSI cash payments for at least 1 month 2) Still meet the disability requirement 3) Still meet all non-disability SSI requirements except for income 4) Need Medicaid to work (or in her case, likely to maintain independence) 5) Have gross earnings below your state's threshold Many SSA offices don't automatically tell people about this option. You need to specifically request a 1619(b) determination. This could be the fastest path to maintaining her Medicaid without interruption.

same thing happened to my cousin when he got DAC but he did end up qualifying for both medicare AND medicaid eventually. the 24 month waiting period for medicare is awful though!!!!! call your state pharmacy assistance program in the meantime they might be able to help with medication costs

This is such a stressful situation and unfortunately way too common! I went through something similar when my son transitioned from SSI to SSDI two years ago. One thing that really helped us was contacting our state's disability advocacy organization - they had a benefits specialist who walked us through ALL the options and even helped us fill out the paperwork. Also, don't forget to ask about retroactive coverage if you do get approved for continued Medicaid through one of these programs. Sometimes they can backdate coverage to prevent any gaps. And definitely get written confirmation of any verbal promises from Medicaid workers - we learned that the hard way! For the medications specifically, GoodRx can sometimes help bridge the gap while you're sorting out coverage, and many pharmacies have their own discount programs. It's not ideal but better than going without her psychiatric meds. Hang in there - there ARE solutions, the system just makes it ridiculously hard to find them!

I'm so sorry you're going through this - the transition from SSI to DAC benefits is one of the most stressful gaps in our disability system. You're not alone in this struggle! Based on what others have shared, here are the most urgent steps I'd recommend: 1. **Call your state Medicaid office TODAY** (not SSA) and specifically ask about "Medicaid continuation for former SSI recipients" and mention the 1619(b) provision that others mentioned. 2. **Visit your county Medicaid office in person** - bring all documentation about her disability, SSI history, and new DAC approval. Ask specifically to speak with a disability Medicaid specialist. 3. **Contact your state's SHIP program** (State Health Insurance Assistance Program) - they provide free counseling for exactly these situations. 4. **Emergency medication coverage** - While you're sorting this out, contact each pharmaceutical company directly for patient assistance programs. Most major psychiatric medications have programs that can provide free or low-cost meds during coverage gaps. The fact that you only have 3 weeks is really concerning, but several people here have successfully navigated this exact situation. Don't let the agencies give you the runaround - you have specific rights and options, they just don't always volunteer this information. Keep us posted on how it goes - this community has your back!

I'm a case worker who helps families navigate these exact transitions, and I want to emphasize something crucial that hasn't been mentioned yet: **Request expedited processing** for any Medicaid application you submit. Given that your daughter's coverage ends in just 3 weeks, most states have emergency/expedited review processes for people losing coverage due to disability benefit changes. When you visit the Medicaid office (definitely go in person as others suggested), bring these documents: - Her original SSI award letter - The new DAC approval notice - The Medicaid termination letter - Recent medication/treatment records showing ongoing need Ask specifically for "presumptive eligibility" or "emergency Medicaid" while your regular application is being processed. Many states can provide temporary coverage for people in your exact situation. Also, if your state has a "211" helpline (dial 2-1-1), they often have real-time knowledge of which local programs can help with prescription costs immediately. Some counties have emergency medication funds specifically for situations like this. The system is broken, but there ARE safety nets - you just have to know exactly what to ask for and be persistent. Don't take "no" for an answer without asking to speak to a supervisor who specializes in disability transitions.

I'm going through this exact same situation right now with my adult son who just switched from SSI to DAC benefits! We got the same terrifying letter about Medicaid ending, and like you, we were getting the runaround between SSA and Medicaid offices. What ended up working for us was going directly to our state's Department of Health and Human Services office (not the SSA office) and asking specifically about "transitional Medicaid for former SSI recipients." They had a completely different application process that nobody had told us about! In the meantime, I'd also recommend calling your daughter's psychiatrist's office right away - many mental health providers have emergency medication samples or can connect you with pharmaceutical company assistance programs. My son's doctor was able to provide a 30-day supply of his mood stabilizer while we sorted out the coverage mess. Also, if your state has a Disability Rights advocacy organization, call them immediately. They often have benefits counselors who know exactly which buttons to push to get expedited processing. Don't let them tell you there's nothing they can do - there are protections in place for people in your daughter's situation, the system just makes them nearly impossible to find! Hang in there - this is fixable, just incredibly stressful in the moment. Keep advocating and don't take no for an answer!

I'm so sorry you're dealing with this terrifying situation - the gap in coverage during DAC transitions is one of the cruelest flaws in our system. Reading through all these responses, it's clear there ARE solutions, but the system makes them nearly impossible to find without insider knowledge. Based on everyone's advice, here's what I'd prioritize for your immediate 3-week timeline: **THIS WEEK:** - Go IN PERSON to your county Medicaid office (not SSA) with all documentation - Ask specifically for "1619(b) determination," "transitional Medicaid," and "presumptive eligibility" - Request EXPEDITED processing due to imminent coverage loss - Contact your state's SHIP program for free counseling **BACKUP PLANS:** - Call pharmaceutical companies directly for patient assistance programs - Contact your daughter's psychiatrist about samples/sliding scale options - Reach out to your state's Disability Rights organization for advocacy help - Look into GoodRx or pharmacy discount programs as temporary bridges The most important thing I've learned from this thread is that you need to use very specific language when asking for help - "emergency medical need due to federal benefit change" seems to be the magic phrase that gets attention. Don't let them shuffle you between offices anymore. You have rights and options - they just don't advertise them. Keep fighting for your daughter!

This entire thread is a perfect example of how broken the system is - families shouldn't have to become policy experts just to maintain basic healthcare during benefit transitions! I went through something similar with my nephew a few years ago, and what saved us was finding a local disability navigator through our Area Agency on Aging. They knew about programs I'd never heard of and actually made the calls WITH us to make sure we were asking the right questions. One thing I didn't see mentioned - if your daughter has been stable on her current medications for a while, ask her psychiatrist about writing prescriptions for 90-day supplies before her Medicaid ends. Some pharmacies will fill them if you pay out of pocket, and it buys you more time to sort out the coverage mess. Also, many psychiatric medications have generic versions that are much cheaper - it might be worth asking about temporary switches to generics during the gap. The fact that so many people in this thread have lived through this exact nightmare shows how systemic this problem is. We really need better coordination between SSA and state Medicaid offices to prevent these dangerous coverage gaps. But until that happens, communities like this are literally saving lives by sharing knowledge the system should be providing upfront. Rooting for you and your daughter - you've got great advice here and people who understand what you're going through!

I'm so sorry you're going through this nightmare - I wish the system made these transitions smoother instead of putting families in crisis mode! Reading through everyone's experiences here, it's clear that while there ARE protections and programs available, the agencies don't proactively share this information when they should. One additional resource to consider: if your daughter is enrolled in any state waiver programs (like developmental disability or mental health waivers), those case managers often have specialized knowledge about maintaining Medicaid during SSI-to-SSDI transitions. They deal with these situations regularly and may know shortcuts that general Medicaid workers don't. Also, when you visit the Medicaid office, ask about "spenddown" programs if the other options don't work out. Some states allow people with disabilities to "spend down" their excess income on medical expenses to qualify for Medicaid coverage. It's not ideal, but it could be another safety net. The psychiatric medication costs you mentioned ($900/month) are exactly why Congress needs to fix this coverage gap - no family should face choosing between medications and financial ruin during what's supposed to be a beneficial change in benefits. Sending you strength as you navigate this maze. This community has given you excellent roadmaps to follow, and I'm confident you'll find a solution. Please keep us updated on what works - your experience could help the next family facing this same terrifying situation!

I'm so glad to see this community rallying around you with such detailed, practical advice! As someone who works with families navigating disability benefits, I wanted to add one more urgent resource: contact your state's Protection & Advocacy (P&A) organization immediately. Every state has one, and they provide free legal advocacy specifically for people with disabilities facing benefit issues. P&A organizations have attorneys who specialize in exactly these SSI-to-SSDI transition problems and can often cut through the bureaucratic runaround you've been getting. They know which specific forms to file and can sometimes get emergency temporary coverage approved while longer-term solutions are processed. Also, document EVERYTHING - keep records of every phone call, office visit, and piece of paperwork. If this situation escalates, having detailed documentation will be crucial for any appeals or advocacy efforts. The 3-week timeline is terrifying, but you now have a comprehensive action plan from people who've successfully navigated this exact situation. Don't let anyone tell you "there's nothing we can do" - armed with all the specific program names and terminology shared here, you can advocate much more effectively. You've got this, and this community is rooting for you and your daughter!

This thread has been an incredible resource! Reading through everyone's experiences, I'm struck by how many families face this exact nightmare - losing Medicaid during the SSI to DAC transition with little to no warning or guidance from the agencies that should be helping. What really stands out to me is how much specialized knowledge is required just to maintain basic healthcare coverage. Between 1619(b) provisions, transitional Medicaid, presumptive eligibility, SHIP programs, P&A organizations, and disability navigators - there are SO many safety nets that exist, but they're essentially hidden from the families who need them most. For anyone else facing this situation, this thread should be bookmarked! The collective wisdom here - from knowing the exact terminology to use ("emergency medical need due to federal benefit change") to understanding which offices to visit in person versus which to call - could literally save lives. I hope the original poster will update us on their outcome. Their situation has created such a valuable knowledge base that could help countless other families avoid this terrifying coverage gap. It's awful that we need these workarounds, but until the system is fixed, community support like this is absolutely essential. Sending support to everyone who's navigated or is currently navigating these impossible bureaucratic mazes!

I just want to echo what everyone else has said - this thread has become such an incredible lifeline for families facing this nightmare transition! As someone who went through this with my disabled brother two years ago, I wish we had had access to this kind of detailed, experienced guidance. One thing I wanted to add that might help with the immediate medication crisis: if you're religious or connected to any faith communities, many churches/synagogues/mosques have emergency assistance funds specifically for healthcare costs. When we were waiting for my brother's coverage to get sorted out, our local interfaith coalition covered his psychiatric medications for six weeks - no questions asked, no paperwork, just immediate help for someone in crisis. Also, some hospitals have "charity care" programs that can provide temporary coverage for outpatient mental health services and medications. It's worth calling the billing department of any hospital system your daughter has used and asking about emergency assistance programs. The fact that this community has essentially had to reverse-engineer the safety net that should be clearly explained by SSA shows how much advocacy is still needed to fix these dangerous coverage gaps. But in the meantime, the collective knowledge shared here is absolutely saving lives and preventing medication interruptions that could be devastating for people with mental health conditions. Wishing you and your daughter all the best as you navigate this - you're not alone in this fight!