Survivor benefits confusion: Can I get half while caring for adult disabled daughter on SSI?

You're dealing with a complex situation that combines several different benefits. Let me try to clarify: 1) Your daughter likely qualifies for Disabled Adult Child (DAC) benefits on your husband's record. This is different from SSI, though she can potentially receive both with proper planning. 2) As a surviving spouse caring for a disabled adult child, you may qualify for mother's/father's benefits until you reach your own full retirement age, regardless of your daughter's age (this is a special rule for parents caring for disabled adult children). 3) The Family Maximum Benefit (FMB) is what's causing confusion. The total benefits paid to all survivors cannot exceed this amount, which appears to be $1,150 in your case. 4) Mother's/father's benefits do NOT have the $2,000 asset limit that SSI has. That's only for SSI. 5) If you start working, your survivor benefit may be reduced by the earnings test if you're under full retirement age, but this doesn't automatically increase your daughter's portion. I strongly recommend requesting an appointment with a Technical Expert at your local office who specializes in survivor benefits. Regular claims representatives often aren't familiar with these complex situations.

I went through something similiar when my husband died leaving me with our disabled son. The SSA people gave me SO MUCH WRONG INFORMATION!!! It was infuriating!!! First, you absolutely CAN get benefits as a mother caring for a disabled adult child - they told me I couldn't at first but I kept fighting. The $2000 asset limit ONLY applies to SSI, NOT to survivor benefits. That's super important!!! And yes, the family maximum limits the total, so you'll probably each get around half of that $1150. But if you work and earn over their limits, your portion gets reduced or eliminated, but it DOESNT automatically go back to your daughter!!! THIS is what they messed up for us and cost us thousands!!!! DON'T trust what the first person tells you! Get EVERYTHING in writing!!!

my huband died 3 years ago and i have a special needs son too. he gets the surivivors benfit and ssi. I get half too as his mom. but when i got a part time job last year my part went down but my sons didnt go up. just less money total for our family. wish someone told me that would happen before i took the job lol

hey so sorry about your husband. my sister has a special needs kid and went thru something similar. gotta be careful with the SSI and assets thing. the survivors benefits aren't affected by assets but SSI is. so your daughter could lose SSI if she has too much money but would still get survivors. complicated stuff!

I'd like to address a common misconception I'm seeing in this thread. When a parent receiving mother's/father's benefits has their portion reduced due to earnings, that amount doesn't simply "disappear" from the family maximum. While it doesn't automatically redistribute to other beneficiaries, you can request a recomputation of benefits. Here's what you should do: 1. Apply for both benefits - your mother's benefits and your daughter's disabled adult child benefits 2. If you start working and your benefit is reduced, immediately contact SSA to request a recomputation of your daughter's benefit 3. Be specific that you're requesting a "recomputation due to family maximum redistribution" Some field offices process this automatically, others don't. This is why you get inconsistent information. The regulations do allow for redistribution, but it often requires a manual intervention.

I've been trying to reach someone at Social Security for 3 weeks to sort out a similar issue with my sister's survivor benefits. Keep getting put on hold for hours and then disconnected. So frustrating! I recently tried a service called Claimyr (claimyr.com) that got me through to an actual person at SSA in under 10 minutes. They have a video showing how it works: https://youtu.be/Z-BRbJw3puU Worth checking out if you need to speak to a specialist about your specific situation. With something this complex, I definitely recommend talking to an actual Technical Expert rather than just going by what we all say here!

I'm confused about something... if your daughter is 25 and disabled since birth, shouldn't she have already been receiving benefits on her father's record before he passed? Or was he not collecting Social Security yet? Because there's a difference between disabled adult child benefits when the parent is alive vs. survivor benefits when they pass away.

Another important consideration: when your daughter starts receiving DAC benefits on your husband's record, her SSI will likely be reduced because DAC benefits count as unearned income for SSI purposes. However, she may still qualify for a reduced SSI payment and, crucially, maintain Medicaid eligibility through SSI even if her SSI payment becomes $0 due to the DAC benefits (this is called the "DAC Medicaid protection"). Also, if you decide to apply for your mother's benefits, be aware that this will count as income when determining your daughter's household living expenses for SSI (if you live together). This might affect her SSI calculation somewhat, but the combined benefits will still be greater than SSI alone. Lastly, if you haven't already, consider applying for your own survivor benefits when you reach age 60 (or 50 if you become disabled). You can then switch to your own retirement benefit if it's higher once you reach your full retirement age.

I forgot to mention something important in my earlier comment. When my son started getting DAC benefits, his SSI went down BUT he kept his Medicaid through something called Section 1634 provisions. MAKE SURE they know about this at SSA because they didn't automatically tell us about it, and my friend's daughter temporarily lost Medicaid because of this!!! Also, the special needs trust is CRUCIAL - good job setting that up already. If your daughter's total assets ever go over $2000 outside the trust, she'll lose SSI and possibly Medicaid depending on your state.

To summarize the key points for your situation: 1. Apply for Disabled Adult Child (DAC) benefits for your daughter on your deceased husband's record 2. Apply for Mother's benefits for yourself as caring for a disabled adult child 3. Understand that the Family Maximum Benefit (in your case $1,150) will likely be split between you and your daughter 4. DAC benefits will reduce your daughter's SSI but she should maintain Medicaid eligibility 5. Mother's benefits have no asset limits but are subject to earnings limits if you work 6. If your benefits are reduced due to work, request a recomputation of your daughter's benefits to redistribute the family maximum 7. Keep your daughter's assets under $2,000 outside of the special needs trust The official guidance for this exact situation is in POMS section DI 10115.001 (SSA's internal operating procedures). If you encounter resistance, specifically reference this section to the claims representative.

My friend went thru similar thing last year and she said the trick is to get everything in writing. Ask them to send you the policy references. Also my nephew with downs gets both SSI and the disabled adult child benefit but they reduced his SSI when the other benefit started. Still he gets more total $ this way and keeps his medicaid which is the main thing.

I wonder if anyone here has used an attorney to navigate this process? I'm considering it for my own situation with my brother's benefits, but not sure if it's worth the cost or if they can actually help with the SSA bureaucracy.

I'm so sorry for your loss. This is definitely a confusing situation, and you're right that SSA representatives often give inconsistent information on complex cases like yours. Based on what others have shared here, it sounds like you should be able to get mother's benefits while caring for your disabled adult daughter, and these benefits don't have the same asset restrictions as SSI. The key seems to be getting to someone who really understands these rules. One thing I'd add - when you do speak with a Technical Expert, ask them to walk you through exactly how the transition will work when your daughter starts receiving DAC benefits. Will her SSI stop completely or just reduce? How long does the process take? Getting a clear timeline might help reduce some of the anxiety around making this change. Also, since you mentioned setting up the special needs trust already, you're clearly thinking ahead - that's going to be so important for protecting her long-term eligibility. I hope you're able to get consistent answers soon and can focus on grieving and caring for your family rather than fighting with bureaucracy.

I'm sorry for your loss and the stress of dealing with these complex benefit rules during such a difficult time. One thing I haven't seen mentioned yet is timing - make sure to apply for both benefits as soon as possible. Survivor benefits can be retroactive up to 6 months from the date of application, but you don't want to lose any potential payments by waiting too long. Also, when you do get through to a Technical Expert, ask them to document your case in their system with all the details about your daughter's disability and your caregiving role. This way, if you have to call back, the next person should be able to see the full picture rather than starting from scratch each time. The earnings test limits change each year, so if you do plan to return to work, make sure you get the current year's figures. For 2025, you can earn up to $23,400 without any reduction in benefits if you're under full retirement age. Keep pushing for accurate information - you and your daughter deserve to receive all the benefits you're entitled to during this challenging time.

I'm so sorry for your loss, Gael. Losing a spouse at such a young age while caring for a disabled adult child must be incredibly overwhelming, especially when you're getting conflicting information about benefits. From what everyone has shared here, it sounds like you're dealing with a perfect storm of complex rules that even SSA representatives struggle with. The key takeaways I'm seeing are: 1. You should qualify for mother's benefits since you're caring for your disabled daughter - this is different from regular survivor benefits and doesn't end when she turns 18 2. The asset limits only apply to SSI, not to your survivor benefits 3. Getting to a Technical Expert is crucial - regular reps often aren't trained on these complex intersections 4. Document everything and get policy references in writing One additional suggestion: when you do apply, consider bringing a written summary of your situation including your daughter's disability onset date, current benefits, and your caregiving role. This might help ensure the representative understands the full picture from the start. The fact that you've already set up the special needs trust shows you're thinking ahead strategically. These benefit interactions are incredibly complex, but it sounds like with persistence and the right SSA contact, you should be able to get both benefits working properly for your family. Wishing you strength as you navigate this process.

I'm so sorry for your loss, Gael. What you're going through with the conflicting information from SSA is unfortunately all too common with these complex benefit situations. Based on my experience helping families navigate these issues, you are absolutely entitled to mother's benefits while caring for your disabled adult daughter. This benefit doesn't have the same age restrictions as regular survivor benefits - it continues as long as you're caring for a disabled child, regardless of their age. A few critical points to remember when you speak with the Technical Expert: 1. Specifically mention that your daughter became disabled before age 22 - this is crucial for DAC eligibility 2. Ask them to reference POMS section RS 00615.742 which covers mother's/father's benefits for parents of disabled adult children 3. Request they put in writing how the family maximum will be allocated between you and your daughter 4. Make sure they understand you're the primary caregiver - this is what qualifies you for the mother's benefit The asset limits absolutely do NOT apply to your survivor benefits - only to SSI. You can have significant assets and still receive your mother's benefit portion. One thing to watch for: some representatives incorrectly think mother's benefits end when the child turns 16. That's only true for non-disabled children. With a disabled adult child, your benefits can continue indefinitely as long as you remain unmarried and are providing care. Document every conversation, get names, and don't accept "no" from someone who clearly doesn't understand these rules. You deserve these benefits during this incredibly difficult time.

FYI, the name of the benefit for taking care of a Disabled Adult Child is "Child-in-Care" benefit, even though the benefit is paid to the parent. It's not called a "mother's father's benefit." (Using the correct terminology can be very important when talking with Social Security.) This benefit may be available not only when one parent has passed away with sufficient quarters in Social Security, but also when both parents are alive but one has claimed their own Social Security or SSDI, and the other spouse is taking care of a child under age 16 or a disabled child.

I'm so sorry for your loss, Gael. Losing your husband at such a young age while caring for a disabled daughter must be incredibly difficult, and dealing with confusing benefit information on top of everything else is just heartbreaking. I haven't been through this exact situation myself, but I wanted to say how impressed I am by all the detailed advice everyone has shared here. Reading through these responses, it's clear that you're dealing with a really complex intersection of different benefit programs that many SSA representatives aren't properly trained on. The fact that you've already set up a special needs trust shows you're thinking ahead strategically for your daughter's future. That was really smart planning that will protect her SSI eligibility long-term. From what I'm learning here, it sounds like the key is getting to someone at SSA who actually specializes in these complex survivor/disability benefit combinations. The terminology Dana mentioned about "Child-in-Care" benefits rather than "mother's benefits" could be really helpful when you call. I hope you're able to get consistent, accurate information soon so you can focus on grieving and caring for your family instead of fighting through bureaucracy. You're clearly a devoted mom doing everything you can to secure your daughter's future during an incredibly challenging time. Please keep us posted on how things work out - I'm sure your experience will help other families facing similar situations.

I'm so sorry for your loss, Gael. What a heartbreaking situation to navigate during an already incredibly difficult time. I work as a benefits counselor and see cases like yours fairly regularly. The confusion you're experiencing is unfortunately very common because these complex intersections between survivor benefits, DAC benefits, and SSI require specialized knowledge that many front-line SSA staff don't have. Here's what you need to know: You ARE entitled to Child-in-Care benefits (the correct term, as Dana mentioned) as the surviving spouse caring for your disabled adult daughter. This benefit continues indefinitely as long as you remain unmarried and are her primary caregiver - there's no age cutoff like with typical survivor benefits. When you call SSA, specifically request to speak with a Technical Expert and use these exact phrases: - "Child-in-Care benefits for surviving spouse caring for disabled adult child" - "POMS reference RS 00615.742" - "Family Maximum Benefit redistribution" Your Child-in-Care benefits have NO asset limits - that's only for SSI. And yes, if you work and your portion is reduced, you can request redistribution of the family maximum to increase your daughter's portion (though many offices won't do this automatically). The most important thing: Apply immediately. You're losing potential retroactive payments every month you delay. Don't let inconsistent information prevent you from filing - you can always appeal if they get it wrong initially. Document everything, get reference numbers for calls, and don't give up. You and your daughter deserve these benefits.