Social Security confusion: Will my CIC survivors benefits stop when my disabled daughter turns 16?

The representative gave you partially incorrect information. If your daughter has a documented disability, you CAN continue receiving your Child-in-Care benefits past her 16th birthday. The age limit of 16 only applies to non-disabled children. From the SSA's own policy (Section 404.350 and 404.351), a parent caring for a disabled child can receive benefits regardless of the child's age, as long as the child's disability began before age 22 and the child is entitled to child's benefits on the deceased parent's record. You should call back and speak with a different representative or ask to speak with a supervisor. Bring up these policy sections specifically and request they review your case again. SSA reps sometimes give incorrect information, especially about less common situations like disabled children's benefits.

the same thing happnd to me last yr!! I got told 3 different things by 3 different ppl at SSA about my disabled son. One said benefits would stop at 16, one said 18, another said they continue. you have to keep calling until you get someone who KNOWS the rules for real. so frustrating!!!!!

I've been through this exact scenario with my disabled daughter who's now 20. Here's what you need to know: 1. YES, you CAN continue to receive Child-in-Care benefits after your child turns 16 IF they meet SSA's definition of disability. The key is getting them to acknowledge and document the disability. 2. At 18, there will be another evaluation when they transition from child disability to adult disability standards (DAC - Disabled Adult Child). This is important because the criteria change. 3. The rep was correct about being able to work without earnings limits while your daughter receives survivors benefits. That part is accurate. 4. Request a meeting with a Technical Expert at your local office, not just any claims representative. They understand these complex cases better. Good luck and don't give up! SSA can be a maze, but persistence pays off.

My son has downs and i went thru same thing. SSA told me id lose my CIC when he turned 16 and they WERE WRONG!! I kept getting my checks cuz he's disabled. Show them doctors paperwork about her condition and insist they check the POMS manual about disabled children and CIC benefits.

I work with families in similar situations, and I can tell you that trying to reach SSA to resolve issues like this is incredibly frustrating. Every time my clients call, they wait for HOURS or get disconnected. Have you tried using Claimyr? It's a service that connects you with a Social Security agent quickly. I've recommended it to several families dealing with complicated survivors/disability benefits issues. Check out their demo at https://youtu.be/Z-BRbJw3puU or visit claimyr.com. It made a huge difference for one of my clients who was dealing with a similar CIC benefit situation.

SSA employee here (not speaking officially). There's a LOT of confusion about this even among SSA staff because it's a complex area. Let me clarify: - Child-in-Care benefits normally stop when a child turns 16 - HOWEVER, if the child is disabled according to SSA standards, CIC benefits can continue indefinitely - The key is whether your daughter meets SSA's definition of disability (not just having a diagnosis) - At 18, there's a redetermination using adult disability criteria - If approved as a Disabled Adult Child (DAC), your benefits can continue You need to specifically request a determination of your daughter's disability status BEFORE she turns 16. Use the phrase "I'd like to request a childhood disability determination to establish continued entitlement to my mother's/father's benefits." Don't take no for an answer without getting this determination.

Start immediately. The disability determination process can take 3-6 months, so you want to get it initiated right away. Make sure you have recent medical records (within the last year) documenting her condition and functional limitations. The SSA will need to see how her condition affects her ability to function in daily activities and potentially work.

btw my cousin got told the same thing but when they actually checked the rules more carefully they found out her benefits DID continue after 16 because her son had autism. they almost cut her off by mistake!! the SSA people sometimes don't know their own rules

One more important thing: If your daughter is receiving SSI (Supplemental Security Income) in addition to survivors benefits, different rules apply. SSI redeterminations happen at age 18 using adult criteria. Since you mentioned she'll be recalculated at 16, it sounds like she might be receiving both benefits. Make sure you're clear about which benefit types you're discussing when you call SSA.

JUST BE PERSISTENT!!!! These SSA people will try to get you off the phone quick and sometimes give wrong info. Ask for a supervisor if you have to. I had to call like 5 times to get someone who actually knew what they were talking about for my disabled kid.

Thank you everyone for all your helpful responses! I feel much more confident now about how to approach this. I'm going to call back tomorrow and specifically request the childhood disability determination using the exact phrasing suggested. I'll also gather all her recent medical documentation to have ready. If I have trouble getting through, I'll try that Claimyr service someone mentioned. I'll update once I get this sorted out!

As someone who's navigated this maze before, I want to echo what others have said - you're absolutely right to question that information! The SSA rep gave you incorrect guidance about CIC benefits stopping at 16 for disabled children. Here's what helped me when I was in a similar situation: Keep a detailed log of every call you make - date, time, name of rep if they give it, and exactly what they tell you. This documentation becomes invaluable if you need to escalate or appeal later. Also, when you call back, don't just ask for the childhood disability determination - ask them to cite the specific POMS (Program Operations Manual System) section they're referencing. If they can't provide it or seem unsure, that's your cue to ask for a supervisor or Technical Expert. One last tip: If possible, try to handle this in person at your local SSA office rather than over the phone. It's harder for them to rush you off or give incomplete information when you're sitting right there, and you can get any determinations in writing immediately. You've got this! Don't let them intimidate you - you know your daughter's needs better than anyone.

I went through this exact situation with my disabled son two years ago, and I can confirm what others have said - the SSA rep gave you incorrect information! Here's what actually happened in my case: My son has cerebral palsy and was receiving survivors benefits. When he turned 16, I was initially told my CIC benefits would stop. I pushed back and requested a formal disability determination. It took about 4 months to process, but they ultimately confirmed he met their disability criteria and my benefits continued without interruption. The key phrase that worked for me was asking for a "childhood disability determination for continued entitlement purposes." I also brought a letter from his neurologist specifically outlining his functional limitations and how they affect his daily living activities. Don't let them brush you off - this is a well-established provision in their own regulations. If the first person you talk to doesn't know about it, politely ask to speak with someone who specializes in disability cases. Your daughter's documented disability should absolutely qualify you to continue receiving those benefits past her 16th birthday. Stay strong and keep advocating for your family! The system is confusing but you have rights here.

I'm a newcomer here but wanted to share what I learned when helping my sister navigate a similar situation last year. The most important thing is getting the right person on the phone - not all SSA representatives are equally knowledgeable about disability benefits for children. When you call, immediately explain that you need help with "CIC benefits continuation for a disabled child turning 16" - this specific language will often get you transferred to someone who actually handles these cases regularly. If the first person says your benefits will stop, don't accept that answer. Ask them to check POMS DI 10115.001 which specifically covers disabled children and CIC benefits. Also, make sure you have her complete medical file ready. They'll want to see not just the diagnosis, but how her condition affects her daily functioning. Things like needing assistance with personal care, supervision for safety, or having significant cognitive limitations that prevent age-appropriate independence. One more tip: if you get pushback, ask for a "continuing disability review" to be initiated now, before she turns 16. This puts the determination process in motion and can prevent any interruption in benefits. The system is frustrating but you're definitely on the right track questioning that representative's advice. Keep fighting for what your daughter is entitled to!

As a newcomer to this community, I wanted to add my voice to everyone else saying that the SSA representative gave you incorrect information. I went through something very similar with my autistic daughter who's now 19. The confusion often comes from the fact that most SSA reps deal primarily with typical cases where CIC benefits do stop at 16. But the disability exception is absolutely real and well-established in their regulations. When I first called about my daughter's situation, I got the same wrong information you did. It wasn't until I specifically mentioned "disabled child exception" that I got transferred to someone who actually knew the rules. Here's what I wish someone had told me: don't just rely on phone calls. Follow up your request for the childhood disability determination in writing - either through mail or by visiting your local office. Get a receipt showing you submitted the request. This creates a paper trail that protects you if there are any processing delays. Also, be prepared for the possibility that they might initially deny the disability determination. My daughter's case was denied at first because the reviewer didn't understand how autism affects daily functioning. We had to provide more detailed documentation from her doctors explaining her need for constant supervision and assistance with life skills. The appeal was approved, but it added several months to the process. Don't give up - you and your daughter deserve these benefits, and the law is on your side here!

As a newcomer here, I wanted to share something that helped me when I was dealing with a similar situation with my disabled son. One thing I learned is that it's really important to request a "protective filing date" when you submit your request for the childhood disability determination. This ensures that if your benefits are temporarily stopped while they review the case, any back payments owed to you will be calculated from the date you first requested the determination, not from when they finally approve it. When I called SSA, I specifically said "I need to establish a protective filing date for a childhood disability determination to continue my Child-in-Care benefits past age 16." The representative made note of this in my case file, which ended up being crucial because the review process took longer than expected. Also, don't be afraid to escalate if you're not getting the right answers. I had to ask to speak with a "Claims Specialist" who handles disability cases specifically. Regular customer service reps often don't have the training on these more complex situations involving disabled children and continuing benefits. You're absolutely doing the right thing by questioning what you were told. Trust your instincts - if something doesn't sound right about losing benefits for a disabled child, it probably isn't right. Keep pushing and don't let them discourage you from pursuing what your family is entitled to receive.

As a newcomer to this community, I wanted to add my support to what everyone else has been saying - the SSA representative definitely gave you incorrect information about your CIC benefits stopping at 16 for your disabled daughter. I recently went through this exact situation with my nephew who has intellectual disabilities. The first three representatives I spoke with all gave me different (and wrong) answers. It wasn't until I got connected with someone in the disability determination unit that I learned about the exception for disabled children. One thing that really helped me was preparing a simple one-page summary before calling that included: my nephew's name and SSN, the fact that he's receiving survivors benefits, his documented disability, and specifically that I was calling to "request a childhood disability determination for continued CIC benefits beyond age 16." Having this written down helped me stay focused during the call and made sure I didn't forget to mention any key details. Also, if you encounter resistance, don't hesitate to mention that you're aware this is covered under CFR 404.350(a)(5) and that you'd like them to document in your file that you're requesting this determination. Sometimes mentioning specific regulations helps demonstrate that you've done your homework and aren't going to accept incorrect information. Keep advocating for your daughter - the law is absolutely on your side here, and you shouldn't have to worry about losing benefits you're legally entitled to receive. This community is proof that with persistence and the right information, these situations can be resolved successfully!