SSI Medicaid loss due to Survivor benefits increase - Pickle Amendment and disabled child benefits questions

The rep is partly right but missed some important details. The Pickle Amendment protects people who were eligible for both SSI and Medicaid, then lost SSI due to COLA increases in Social Security benefits. It allows you to keep Medicaid if losing it would cause hardship. What they didn't explain well: Your survivor benefits as a parent caring for a child under 16 do stop when the child turns 16 - that part is true. BUT there is a benefit called Childhood Disability Benefits (CDB) that can continue for your daughter past 18 if she was disabled before 22. For yourself, look into the benefits for parents caring for disabled adult children. While not exactly as the rep described, there are provisions that might help your situation when she's older.

I went through this EXACT situation with my son!!! The Pickle Amendment saved us, but it's not well known even among HHS workers. Print out info about it before you go! The income limits depend on your state (we're in Texas), but generally if you qualified for SSI before, you might qualify under Pickle. And YES the worker was WRONG about your benefits!! Parents caring for disabled children CAN receive benefits past age 16 if the child receives Social Security disability benefits on a parent's record. It's called the "Mother's or Father's benefit" and continues until the child turns 18 (or 19 if still in secondary school). This system is SO FRUSTRATING and half the workers don't know all the rules!!!

The Pickle Amendment (Section 503) is specifically for people who were eligible for both SSI and Medicaid, but lost SSI eligibility due to COLA (Cost-of-Living Adjustment) increases in their Social Security benefits. It's designed to protect Medicaid eligibility in these specific cases. Regarding the benefits: When your child turns 16, your survivor benefits (technically called "Mother's or Father's insurance benefits") will end unless you're also disabled. Your daughter will continue receiving her survivor benefits until age 18 (or 19 if still in school). However, if she was disabled before age 22, she can transition to what's called Childhood Disability Benefits (sometimes called Disabled Adult Child benefits) on the deceased parent's record when she reaches adulthood. This is likely what the representative was referring to. For specific income limits for Pickle Amendment protection, you'll need to contact your state Medicaid office as it varies by state.

my son has disabilities and we had similar problems. the pickle thing helped keep his medicaid but took like 3 months to process so start early!! and ya the SSA people sometimes dont know all the rules about disabled kids, i got told wrong info twice before someone knew what they were talking about

ive been on hold with social security for 2+ hours trying to get answers about my son's disability benefits. they keep transferring me and disconnecting! this system is broken and they expect parents of disabled kids to somehow navigate it all while caregiving fulltime?!?! it's INSANE.

my sister had 2 go thru this. the pickle thing is real but some medicaid workers have never heard of it!! bring the actual law printed out when u go. and yes u lose ur benefits at 16 but there r other options later. the whole system is designed 2 confuse ppl i swear

WAIT - I just realized something important! If your household income increased because of the survivor benefits, did they do a proper calculation for the parent-to-child deeming rules? Not all your income should count against your daughter's SSI eligibility! Make sure they calculated the parental allocation correctly. Ask for a detailed breakdown of how they determined she was ineligible. Sometimes they make mistakes with these calculations!

One additional resource to consider: Contact your state's SHIP (State Health Insurance Assistance Program) or P&A (Protection and Advocacy) organization. They often have benefits counselors who specialize in these complex situations involving disability benefits and Medicaid. They can provide free guidance on the Pickle Amendment application and other potential options for maintaining healthcare coverage. The transition periods you're concerned about (at age 16 and again at 18) require careful planning. A benefits counselor can help you map out the timeline and understand all available options. These services are free and often more knowledgeable than general SSA staff about these specific situations.

This whole system is DELIBERATELY complicated. They make it impossible to navigate so people give up. My daughter lost benefits for 8 months because of contradictory information from SSA. We finally got a lawyer who specializes in disability benefits and suddenly everything got fixed. Had to pay for the lawyer but it was worth it because we got backdated benefits. The government agencies work against disabled people, not for them.

I'm going through something similar with my disabled son and want to add a few things that might help. First, definitely appeal the SSI termination in writing within 60 days if you haven't already - this preserves your right to continued benefits during the appeal process. For the Pickle Amendment, each state has different application processes. In my state (California), I had to apply through the county social services office, not directly through SSA. The key is proving you were receiving both SSI and Medicaid before the COLA increase caused the loss of SSI eligibility. Also, document EVERYTHING. I keep a log of every phone call with dates, times, and the name of who I spoke with. When workers give conflicting information (which happens constantly), I ask them to put it in writing or send me to a supervisor. One more tip: If your daughter is receiving survivor benefits on your late husband's record, those benefits might actually be higher than what she'd get from SSI when she becomes an adult through the Childhood Disability Benefits program. Sometimes the transition actually works in your favor financially, even though losing your own benefits at 16 is scary. Hang in there - this system is brutal but there are people who will help you navigate it properly.

I'm so sorry you're dealing with this stress on top of everything else. I went through almost the exact same situation with my disabled daughter when my husband passed. The conflicting information from SSA workers is unfortunately very common - I think I talked to 6 different people and got 6 different answers. A few things that helped me: First, ask for everything in writing and request to speak with a supervisor when you get conflicting info. Second, the Pickle Amendment application varies by state but generally you apply through your state Medicaid office, not SSA directly. Third, definitely look into your state's Protection & Advocacy organization - they have specialists who deal with these complex benefit transitions and they're free. The gap period when she turns 16 and you lose survivor benefits is real, but there may be other state programs or supports available during that time. Also, make sure they calculated the parental deeming correctly for her SSI - they sometimes make errors with these calculations, especially when survivor benefits are involved. You're not alone in this maze, and there are people who can help you navigate it properly. Don't give up - your daughter needs those benefits and you deserve accurate information to make the right decisions.

I'm so sorry you're going through this nightmare - the stress of losing benefits on top of grieving is just cruel. I've been helping families navigate these situations for years through my work with a disability advocacy group, and unfortunately your experience with conflicting information is extremely common. A few critical things to know: First, you have 60 days from the SSI termination notice to file an appeal, and if you do this, your daughter can continue receiving benefits during the appeal process. This buys you time to sort everything out properly. Second, definitely question their income calculations. The parental deeming rules are complex, and survivor benefits don't always count dollar-for-dollar against SSI eligibility. Ask for a detailed breakdown showing exactly how they calculated the excess income. For the Pickle Amendment, you'll apply through your state Medicaid office (not SSA). Bring documentation showing your daughter was receiving both SSI and Medicaid before the change, and that the loss was specifically due to increased Social Security benefits. Regarding your benefits stopping at 16 - this is correct for standard survivor benefits, but there are sometimes other programs available during that gap period before she turns 18. Contact your state's SHIP program or Protection & Advocacy organization - they specialize in these transitions and know all the available options. You're being a great advocate for your daughter. Don't let them railroad you with incomplete information!

I'm so sorry for your loss and the additional stress this bureaucratic maze is putting on your family. As a newcomer here but someone who's worked with families in similar situations, I want to emphasize a few key points that others have touched on: First and most importantly - if you haven't already, file that appeal within 60 days of the SSI termination notice! This allows your daughter to continue receiving benefits while you sort everything out. Many families don't know about this crucial window. Second, the Pickle Amendment is real but underutilized because even agency workers often don't know about it. You'll typically need to apply through your state's Medicaid office, not SSA. Bring printed documentation of the law when you go - SSA Publication No. 05-10003 mentions this protection. Third, absolutely question their income calculations. The parental deeming rules for SSI are incredibly complex, especially when survivor benefits are involved. Not all of your survivor benefits may count against your daughter's eligibility. Demand a detailed breakdown showing exactly how they calculated the "excess" income. Finally, contact your state's Protection & Advocacy organization immediately. They have specialists who deal with these exact transitions and they're free. They know the system better than most SSA workers and can help you navigate both the immediate crisis and the upcoming transitions at ages 16 and 18. You're fighting for your daughter's essential healthcare and support - don't let them wear you down with bureaucratic runaround. There are people and resources to help you through this.

I'm new to this community but wanted to share what I learned from a similar situation. When my nephew's SSI was terminated due to my sister's increased survivor benefits, we discovered the SSA worker had made a calculation error with the parental deeming rules. The key thing we learned: not all of the survivor benefits count as "deemed income" for SSI purposes. There are specific exclusions and allocations that many workers don't calculate correctly. We had to request a detailed breakdown three times before they showed us the actual math, and sure enough, they had counted income that should have been excluded. Also, regarding the Pickle Amendment - in our state (Ohio), we had to apply through the county Department of Job and Family Services, not the state Medicaid office directly. Each state handles it differently, so definitely call your state's Medicaid office first to find out the correct process. One more tip: if you're feeling overwhelmed by all the different rules and timelines, ask if your state has a "benefits counselor" program through the Department of Developmental Disabilities. They often know these complex interactions between different benefit programs better than the individual agency workers. Hang in there - this system is designed to be confusing, but there are people who can help you navigate it properly!

I'm new to this community but going through something very similar with my disabled son. Reading through all these responses has been incredibly eye-opening - I had no idea about the 60-day appeal window or the Pickle Amendment! What really stands out to me is how many of you have mentioned getting different information from different SSA workers. This seems to be a systemic problem where frontline staff aren't properly trained on these complex disability benefit interactions. It's honestly infuriating that families dealing with grief and caregiving have to become experts in federal regulations just to get accurate information. For Connor - based on everything I've read here, it sounds like you have several action items: 1) Check if you're still within the 60-day appeal window, 2) Request that detailed income calculation breakdown, 3) Contact your state's Protection & Advocacy organization, and 4) Research the Pickle Amendment application process in your state. One question for the group - has anyone had success getting a case manager or benefits counselor assigned to help coordinate all these different programs? It seems like there should be someone whose job it is to help families navigate these transitions, especially when a parent dies and everything changes at once. This community is amazing - the collective knowledge here is better than what most SSA workers seem to have!

I'm new to this community but unfortunately not new to navigating these benefit nightmares. Reading your situation brings back so many memories of the confusion and panic I felt when dealing with similar issues for my disabled daughter. First - and I can't stress this enough - if you haven't already filed an appeal of the SSI termination, do it IMMEDIATELY. You have 60 days from the notice date, and filing preserves her benefits while you fight this. Don't wait another day on this one. Second, I'm seeing a pattern in these responses that gives me hope for your situation: multiple people have mentioned calculation errors with parental deeming rules. The fact that SSA didn't provide you with a detailed breakdown of how they calculated the "excess income" is a huge red flag. In my experience, when they're confident in their math, they show their work. When they're not, they just send a vague termination letter. For the Pickle Amendment, yes it's real and yes it can help, but you'll need to be your own advocate. Print out the relevant sections of Social Security Act Section 1619(b) and SSA Publication 05-10003 before you go to your state Medicaid office. Half the workers have never heard of it. One thing that saved us: I started keeping a detailed log of every phone call - date, time, worker name, employee ID if they'd give it, and exactly what they told me. When I got conflicting information (which was constantly), I'd reference my previous calls and ask them to explain the discrepancy. Amazing how quickly they'd escalate me to someone more knowledgeable. You're not alone in this fight, and your instincts that something isn't right are probably correct. These systems are designed to be confusing, but there are ways through if you know what questions to ask.

I'm new to this community but wanted to jump in because I'm currently going through almost the exact same situation with my 15-year-old daughter. Reading through all these responses has been both validating and incredibly helpful - it's clear that getting conflicting information from SSA workers is unfortunately the norm rather than the exception. What strikes me most is how many people have mentioned calculation errors with the parental deeming rules. This gives me hope that there might be an error in your case too. The fact that they didn't provide a detailed breakdown of their income calculations when they terminated her SSI is suspicious - in my limited experience, when agencies are confident in their decisions, they show their work. I'm taking notes on everyone's advice here for my own situation: the 60-day appeal window (crucial!), requesting detailed calculations, contacting Protection & Advocacy organizations, and researching the Pickle Amendment process in my state. It's overwhelming but having this roadmap helps so much. One thing I've learned from this thread is the importance of documentation. I'm going to start keeping a detailed log of every interaction like others have suggested. It seems like when you have specific dates, names, and conflicting statements written down, it forces them to take you more seriously and escalate to someone more knowledgeable. Connor, I hope you're able to get this sorted out quickly. Your daughter deserves those benefits and you deserve accurate information to make the right decisions. This community seems like an amazing resource for navigating these impossible systems!

I'm new to this community but unfortunately familiar with these benefit nightmares. Reading your story brings back the panic I felt when dealing with similar issues for my disabled son after my husband passed. A few things that might help based on what others have shared here: First, if you haven't already, PLEASE file an appeal within 60 days of that SSI termination notice - this keeps her benefits flowing while you fight it. Second, definitely demand that detailed income calculation breakdown. The fact that multiple people here have discovered calculation errors gives me real hope for your situation. I want to add something I learned the hard way: when you call SSA, ask for the worker's full name and employee ID number at the start of the call, then take notes throughout. Tell them you're documenting the conversation. It's amazing how much more careful and helpful they become when they know you're keeping records. Also, don't let them rush you off the phone. If something doesn't make sense, ask them to explain it differently or connect you to a supervisor. You have every right to understand decisions about your daughter's benefits, especially ones that affect her healthcare. The Pickle Amendment is definitely worth pursuing - bring printed copies of the relevant laws when you apply. And yes, the Protection & Advocacy organizations others mentioned are absolute lifesavers for navigating these transitions. You're being an incredible advocate for your daughter during an already difficult time. Don't let this broken system wear you down!