Applying for Social Security childhood disability benefits after being denied SSI - stuck at step 3 for 13 months

You're definitely on the right track with the Disabled Adult Child benefits (technically called Childhood Disability Benefits or CDB). Since your condition started before age 22 and you have a parent receiving SSDI, this is potentially your best option. Here's what I'd recommend: 1. File a NEW application specifically for CDB under your mother's record. Don't wait for the pending SSI case - these are completely different programs. 2. Get a status update on your pending hearing request. Call and specifically request to speak with the hearing office handling your case. If they won't transfer you, ask for the direct number to that office. 3. Consider getting a disability attorney at this point - most work on contingency (only get paid if you win). They can often speed things up considerably. The 13-month wait at Step 3 is unfortunately not unusual in the current backlog, but it's worth checking if something's stuck in your file. Good luck!

my sister went thru somethign like this!!! the SSI denail then the whole childhood disabilty thing. took her almost 3 YEARS to get approved even tho she had cancer as a teenager!!! its INSANE how they treat ppl who are sick. the systems broken. hope u get better luck than she did

I successfully received Childhood Disability Benefits after my father passed away, though my situation was slightly different. My diagnosis (severe congenital heart defect) was from birth, and I applied when I was 25. Based on my experience, here are the key things that made a difference: 1. Medical documentation is EVERYTHING. Make sure every single doctor has documented how your condition limits your ability to work. General statements like "patient has kidney stones" aren't enough - you need them to specifically document functional limitations. 2. Apply for CDB separately from your SSI case. While technically they should consider all eligibility, in practice, they often don't unless you specifically apply. 3. Your application being stuck at Step 3 for 13 months is concerning. That's the medical review step, and it shouldn't take that long unless there's missing information or your case was misplaced. 4. Get a case status from your local office in person if possible. Phone representatives often can't see the detailed notes. Feel free to message me if you have specific questions about the CDB process. It's less common than regular disability, so even some SSA employees don't fully understand it.

Why would u even qualify for disability for kidney stones??? Plenty of people work with medical conditions. My sister has the same thing and works full time as a nurse!!! Not trying to be rude just saying maybe thats why ur getting denied.

I went through a similar nightmare with my SSDI case a few years ago. After waiting 16 months with no movement, I discovered Claimyr.com which helped me actually reach a human at SSA who could give me real answers. Had my case been sitting in the wrong department for MONTHS! Their service got me through to an agent in 15 minutes when I'd been trying for weeks. They have a video that shows exactly how it works: https://youtu.be/Z-BRbJw3puU After getting through to someone who could actually see my full file, I found out they were missing medical records from one doctor that was preventing them from moving forward. Once I knew the specific issue, I was able to resolve it and my case started moving again. In your situation, I'd definitely recommend starting the CDB application ASAP while also following up on your pending case. Don't wait for one to resolve before trying the other path.

THE WHOLE SYSTEM IS DESIGNED TO MAKE YOU GIVE UP!!!! They KNOW most people will just stop trying after getting denied because were SICK and dont have the energy to fight!!!! Theyre COUNTING on you giving up!!! DONT LET THEM WIN!!!!

Just to clarify some information about Childhood Disability Benefits (CDB): 1. You can qualify under EITHER parent's record if they're receiving Social Security retirement/disability OR if they're deceased. 2. You need to prove your disability began before age 22, which sounds like you can do easily with your diagnosis at 13. 3. Unlike SSI, CDB has no income or resource limits. The financial status of your household won't affect eligibility. 4. The benefit amount is based on your parent's Social Security record (generally 50% if they're alive, 75% if deceased). 5. Most importantly: If you're applying based on your mother's record who is receiving SSDI, you should specifically request that they take a "protective filing date" back to when you first inquired about benefits. This could potentially get you some retroactive benefits. I'd recommend contacting your local field office directly rather than the general SSA number. The field offices often have more flexibility to help with complicated cases.

Hey there - I went through this exact process! So I have hereditary spastic paraplegia (diagnosed at 16) and my dad passed away when I was 19. I didn't know about CDB until I was 34! What finally worked for me: 1) I went IN PERSON to my local SSA office with ALL my medical records organized chronologically (original diagnosis through current) 2) I specifically requested to talk to someone familiar with CDB/DAC benefits (not everyone knows these well) 3) I brought a letter from my neurologist specifically stating my condition began before 22 and has prevented substantial gainful activity continuously since then 4) Here's what they don't tell you - you need to specifically fill out both the adult disability application AND form SSA-4-BK (Child's Benefits) My application was approved in about 4 months, which is lightning fast for disability. I think going in person with everything perfectly organized made all the difference. Good luck!

I'm so sorry you're dealing with this frustrating process! I went through something similar with my own disability case a few years ago. The waiting is absolutely the worst part, especially when you're already dealing with health issues and financial stress. A few things that helped me during my long wait: 1. Document EVERYTHING - keep a log of every phone call, date, time, who you spoke with, and what they told you. This saved me multiple times when representatives gave conflicting information. 2. For your current stuck case, try calling first thing in the morning (8am) or later in the evening. I found I got through faster and sometimes reached more experienced reps who could actually see detailed case notes. 3. Consider reaching out to your congressional representative's office. They have a constituent services department that can sometimes get movement on stalled federal cases. It's a free service and they're surprisingly effective at getting answers from SSA. Your situation with potentially qualifying for CDB is really promising - having that genetic condition diagnosed at 13 definitely meets the "before age 22" requirement. The fact that you could have been eligible for years is infuriating but also hopeful for your future benefits. Stay strong - I know it feels endless, but you WILL get through this process. Your condition is real, your limitations are valid, and you deserve support. Don't let anyone make you feel otherwise.

I'm dealing with a similar situation with my own disability case, and I wanted to share something that might help with your stalled application. After 11 months of being stuck at the same step, I discovered that sometimes cases get flagged for additional review that wasn't communicated to the applicant. Here's what I learned that might apply to your situation: 1. Request a "case status inquiry" through your local field office - this is different from just calling the main number. They can sometimes see internal notes that phone reps can't access. 2. Ask specifically if your case needs any additional medical evidence or if there are any outstanding requests. Sometimes they send letters that get lost or never arrive. 3. For the CDB application, definitely pursue that simultaneously. Since your condition was diagnosed at 13 and you have a parent on SSDI, this could be your fastest path to benefits. 4. One thing that really helped me was getting a letter from my primary care doctor that specifically addressed my "residual functional capacity" - not just listing my conditions, but explaining exactly how they limit my ability to work 8 hours a day, 5 days a week. The 13-month wait is unfortunately becoming more common with the current backlog, but don't give up. Your cystinuria with that level of surgical intervention absolutely sounds like it would meet their criteria. Keep pushing - you've got this!

I'm so sorry you're going through this exhausting process. Your situation with cystinuria requiring 4-5 surgeries annually absolutely sounds disabling - anyone questioning that clearly doesn't understand the severity of your condition. A few things that might help based on what others have shared: 1. **Definitely pursue the CDB application immediately** - don't wait for your current case to resolve. Since your condition was diagnosed at 13 and your mom is on SSDI, this could be your best path forward. 2. **Visit your local SSA field office in person** if possible. Bring all your medical records organized chronologically, and specifically ask to speak with someone experienced in CDB cases. Request they check for any missing information that might be stalling your current application. 3. **Get updated medical documentation** that focuses on functional limitations rather than just diagnosis. Your doctors need to document how unpredictable stone episodes, pain levels, and recovery from surgeries prevent you from maintaining consistent work. 4. **Consider contacting your congressional representative's office** - their constituent services can sometimes get federal agencies to respond when cases are stuck. The fact that you've been dealing with this condition since age 13 and have such extensive medical history should work in your favor for CDB. Keep pushing - you deserve these benefits and shouldn't have to struggle financially while dealing with such a serious medical condition.

I'm really sorry you're dealing with this bureaucratic nightmare while managing such a serious medical condition. The combination of constant kidney stones requiring multiple surgeries per year plus the financial stress of waiting over a year for a decision sounds absolutely exhausting. From what everyone has shared, it definitely sounds like pursuing the Childhood Disability Benefits route under your mother's record is your best bet. The fact that you were diagnosed at 13 with a genetic condition and your mom is already receiving SSDI checks all the boxes for CDB eligibility. One thing I'd add to all the great advice here - when you do visit the local office, consider bringing a detailed timeline showing how your condition has progressed since diagnosis. Include dates of major surgeries, hospitalizations, and periods when you couldn't work. This can help demonstrate the continuous nature of your disability since before age 22. Also, don't let anyone make you feel like you're not "disabled enough." Cystinuria requiring 4-5 surgeries annually is absolutely a disabling condition - the unpredictability alone makes it nearly impossible to maintain steady employment, not to mention the physical toll and recovery time. Keep advocating for yourself. The system is frustrating and slow, but you have a legitimate claim and deserve these benefits. Wishing you the best of luck getting some movement on your case soon!

I'm really sorry you're going through this incredibly frustrating process. Having dealt with disability applications myself, I know how draining it can be to navigate the system while managing a serious medical condition. Based on everything you've shared, I'd strongly recommend pursuing the Childhood Disability Benefits (CDB) route immediately. Since you were diagnosed with cystinuria at 13 (well before age 22) and your mother is receiving SSDI, you should definitely qualify. The fact that an SSA rep even mentioned this suggests it's your strongest path forward. A few practical suggestions: 1. Don't wait for your current SSI case to resolve - file the CDB application as a completely separate claim under your mother's record 2. When you apply, specifically request a "protective filing date" back to when you first inquired about benefits, as this could get you retroactive payments 3. Focus on getting medical documentation that clearly states how your condition prevents you from working consistently (not just the diagnosis, but functional limitations) For your stalled case, try visiting your local field office in person rather than calling. Phone reps often can't see the detailed case notes that might explain the delay. The requirement for 4-5 surgeries annually plus constant ER visits absolutely sounds disabling - don't let anyone make you question the legitimacy of your claim. Keep advocating for yourself!

I'm so sorry you're dealing with this exhausting process on top of managing such a complex medical condition. Cystinuria requiring 4-5 surgeries annually is absolutely debilitating - the unpredictability alone would make it nearly impossible to maintain steady employment. Based on everything you've shared and the great advice from others here, I'd definitely prioritize the CDB application under your mother's record. Since you were diagnosed at 13 with a genetic condition and your mom has been on SSDI since 2007, this seems like your strongest path forward. A couple of additional thoughts that might help: 1. **When documenting your condition**, emphasize the unpredictable nature - employers need reliability, and when you never know when you'll need emergency surgery, that's a huge barrier to employment that SSA should understand. 2. **For your stalled case**, 13 months at Step 3 suggests they might be waiting for additional medical evidence or there could be a clerical issue. Definitely try the in-person visit to your local office. 3. **Consider keeping a symptom diary** going forward - documenting pain levels, ER visits, work days missed, etc. This can be powerful evidence of how your condition actually impacts daily functioning. The financial stress while waiting is awful, and your partner burning out as sole provider adds another layer of difficulty. You're dealing with so much, and you absolutely deserve support through this system you've been paying into. Don't give up - your claim is legitimate and you will get through this process.