I'm a social worker who specializes in disability benefits and wanted to share one more crucial timing consideration that could save your family a lot of stress. When your dad files for Social Security retirement, there's often a 2-3 month processing delay before your brother's DAC benefits actually start being paid, even though he'll be entitled from your dad's benefit start date. During this gap period, your brother should continue receiving his full SSI payments since his DAC hasn't actually started yet. However, once the DAC benefits begin and SSI stops, there can be another delay before the Medicaid office processes the Section 1634(c) continuation. I've seen families go weeks or even months with Medicaid showing as "terminated" in the system while the continuation gets sorted out. During this time, pharmacies and doctors might show your brother as having no coverage. My recommendation: Contact your brother's pharmacy and key medical providers BEFORE this transition begins. Explain the situation and ask about their policies for covering prescriptions/services during benefit transitions. Many have hardship programs or will work with you if they know a Medicaid continuation is pending. Some will even accept a letter from you explaining the Section 1634(c) protection while the official Medicaid update is being processed. Also, if your brother takes expensive medications, ask his doctor about getting a 90-day supply filled right before the transition to avoid any gaps in medication access. Being proactive with healthcare providers has saved many families from dangerous interruptions in medical care during these transitions.

As someone who went through this exact transition with my adult son last year, I want to add one more critical piece of advice: get everything in writing BEFORE your dad files for retirement benefits. I made the mistake of relying on verbal assurances from SSA representatives, and when issues arose during the transition, different agents gave me completely contradictory information. What saved us was finally getting to a supervisor who provided written documentation of: 1. The exact DAC benefit amount my son would receive 2. The date SSI would terminate 3. Confirmation that he qualified for continued Medicaid under Section 1634(c) 4. A reference number for the case that I could use with future representatives I also discovered that some states have a "pre-application" process for the Medicaid continuation where you can submit paperwork before the DAC benefits actually start. This prevented any gap in coverage for us. Ask your state Medicaid office if they have this option. One last tip: if you encounter resistance from any agency (SSA, Medicaid, etc.), don't hesitate to escalate to supervisors or even contact your state legislators' constituent services offices. They often have staff who can cut through bureaucratic red tape when agencies aren't following federal requirements properly. Your brother is lucky to have such a thorough advocate! With all the preparation you're doing, this transition should go much smoother than most families experience.

I'm new to this community and just wanted to add my voice to thank everyone for sharing such detailed and helpful experiences! My husband recently started receiving his Social Security benefits and we're about to begin the spousal benefits process for me, so this thread is incredibly timely. Reading through all these responses has been both educational and honestly pretty shocking. I had no idea that the SSA system was so poorly designed for spousal benefit applications, or that getting rejected first was actually a normal part of the process. It's really frustrating that they don't just have a straightforward way to apply for spousal benefits directly! The specific advice about calling the local office and using the terminology "auxiliary benefits as a spouse" is exactly what I needed to know. I'll definitely have our marriage certificate, Social Security cards, and his benefit award letter ready when we make that call. Carmen, I really hope your call goes smoothly and you get everything sorted out with retroactive benefits! Thank you for sharing your experience - it's helping so many of us who are navigating this confusing system. This community is such a valuable resource for dealing with government bureaucracy!

I'm new to this community and just went through this exact same situation with my spouse! We received that confusing rejection letter about three weeks ago and I was really panicking until I found this thread. Following everyone's advice here, I called our local SSA office and specifically asked about "auxiliary benefits as a spouse" - that terminology really made all the difference. The representative immediately knew what I needed and was much more helpful than when I had called before without using those specific words. We had our appointment last Tuesday and brought all the documents everyone mentioned - marriage certificate, both Social Security cards, photo IDs, and my benefit award letter. The whole process took about 30 minutes and they were able to process the spousal benefits application correctly this time. The representative also explained that the online system really isn't designed for spousal-only claims, which is why we got rejected initially. She said this happens constantly and they're working on improving the system, but for now the phone/in-person route is much more reliable for spousal benefits. Carmen, definitely don't appeal that rejection letter - it would just create more delays. Call the local office like everyone suggested and you should get this sorted out quickly. Thank you for posting about this because it's clearly helping so many people who are dealing with the same confusing process!

This thread has been incredibly helpful! As someone just starting to research this for my 17-year-old son with intellectual disabilities, I'm taking notes on all the practical advice shared here. One thing I'm curious about - has anyone dealt with this situation where the adult child receives both DAC and SSI? From what I'm reading, it sounds like the living arrangement might not affect the DAC portion but could definitely impact SSI. Is that correct? Also, I'm wondering about the transition period. When you first set up the separate living arrangement, did SSA require any kind of inspection or just accepted your documentation? I'm trying to understand if they physically verify the separate household setup or if it's mainly based on the paperwork you provide. The point about checking zoning laws first is so important - I definitely need to look into our local ADU regulations before getting too far into planning. Thanks to everyone sharing their real experiences rather than just general advice!

This is such a comprehensive discussion! As a newcomer to this community, I'm amazed by how helpful everyone has been sharing their real experiences. My 22-year-old brother with Down syndrome is in a similar situation, and reading through all these responses has given me so many ideas I hadn't considered. I particularly appreciate the emphasis on documentation from day one - it seems like having everything properly recorded from the start saves a lot of headaches later. The advice about separate bank accounts, formal lease agreements, and keeping detailed expense records really resonates. One additional resource I wanted to mention for anyone reading this thread: our local Independent Living Center has been incredibly helpful in navigating these kinds of housing transitions. They often have benefits counselors on staff who understand both the SSA rules and local housing regulations. Might be worth checking if there's one in your area! @Jade O'Malley - best of luck with your daughter's transition to independence. It sounds like you're approaching this thoughtfully and she's lucky to have such a supportive parent helping navigate all these complex rules!

I'm also new to this community and currently going through the exact same waiting period! My SSDI back pay of $10,750 has been showing in MySocialSecurity for 8 days now and I've been checking my bank account constantly. Reading through everyone's experiences here has been incredibly reassuring - I had no idea that 5-15 business days was completely normal for larger back payments. The manual review process for amounts over $10,000 that several people mentioned explains perfectly why mine is taking longer. It's so frustrating that SSA doesn't explain any of these delays upfront, especially after already waiting over a year for approval! Based on all the timelines shared here, it sounds like we're all still well within the normal range. This community is amazing for providing the real information that SSA doesn't tell you. Thank you to everyone who has shared their experiences - it really helps those of us going through this process for the first time understand what's actually normal!

I'm brand new to this community and just went through my SSDI approval process last week! My back pay of $8,900 showed up in MySocialSecurity 5 days ago and I've been anxiously checking my bank account multiple times a day. Reading through everyone's experiences here has been such a huge relief - I had absolutely no idea that 5-15 business days was completely normal for back payments, especially larger amounts like ours. Nobody at SSA mentioned anything about manual reviews or enhanced security processing during my approval call. It's incredibly frustrating that they don't explain these delays upfront, but this community has been amazing for filling in all those information gaps! Based on everyone's shared timelines, it sounds like I'm still well within the normal range. Thank you to everyone who took the time to share their experiences - it really helps newcomers like me understand what's actually normal versus what we should worry about. After waiting 15 months for approval, this last waiting period feels endless, but knowing it's standard makes it so much more bearable!

As a newcomer to this community who just went through the auxiliary benefits process 3 weeks ago, I wanted to add my voice to this incredibly helpful thread! I was terrified about my phone appointment but it ended up being much smoother than I anticipated. The interview took about 40 minutes and the representative was very patient and professional. One thing I haven't seen mentioned yet - they asked me about any joint bank accounts or savings accounts that have my children's names on them. It wasn't disqualifying, just for their records, but I wasn't expecting that question. They also asked if I had ever applied for or received auxiliary benefits before (even if denied), which was easy to answer but good to be prepared for. Another question that caught me slightly off guard was whether my children had ever been in foster care or lived with anyone else, even temporarily. I followed everyone's advice about creating a detailed cheat sheet and it made all the difference! I also had my phone on speaker with a notebook ready to jot down the claim number and any important details they mentioned. For documents, I absolutely recommend the in-person route. I went to my local SSA office 2 days after the call and the whole process took 15 minutes. They made copies, gave me detailed receipts, and the staff member even explained what would happen next in the process. Benefits started exactly 4 weeks after document submission, with full retroactive pay back to the application date. The kids were so excited about their first "Social Security payment"! Thank you to everyone in this thread for sharing such detailed experiences - it really made all the difference for a nervous newcomer like me.

As a newcomer to this community, I just wanted to express my gratitude for this incredibly detailed and helpful thread! I'm scheduled for my auxiliary benefits phone appointment in two weeks for my kids (ages 5 and 12), and reading through everyone's experiences has completely transformed my anxiety into confidence. The practical advice shared here is invaluable - from creating a comprehensive cheat sheet with all the children's information to having the SSDI award letter ready, preparing for detailed questions about living arrangements and family history, and definitely planning to submit documents in person rather than by mail. The consistent timeline of 4-6 weeks from phone interview to first payment that everyone has reported gives me realistic expectations. What really stands out is how patient and thorough the SSA representatives seem to be during these calls. I was worried about seeming unprepared or taking too long to find information, but it's clear they're used to walking parents through this process step by step. One thing I'm particularly grateful for is learning about all the specific questions they might ask - from basic info about the kids to more detailed questions about previous addresses, other government benefits, joint accounts, and even previous living arrangements. Having this roadmap makes me feel so much more prepared. Thank you to everyone who took the time to share such detailed experiences. This community has shown me exactly what supportive, knowledge-sharing looks like, and I hope to pay it forward once I complete my own process!