Will Medicaid waiver payments as caregiver for my special needs adult child affect my early Social Security retirement?
Hi everyone, I'm facing a decision about taking early Social Security retirement and need some guidance. I'm turning 62 next month and trying to figure out if I should start collecting my retirement benefits. My situation is a bit complicated - I have a 31-year-old daughter with special needs who lives with me. I serve as her paid caregiver through a Kentucky Medicaid waiver program. The income I receive for caregiving is classified as "Nontaxable Medicaid Waiver" payments, which I deduct on Schedule 1 when filing taxes (not considered taxable income by the IRS). What I can't figure out is whether Social Security counts this caregiver income when calculating my monthly earnings limit. I'm planning to continue as her caregiver even after starting retirement benefits, but I don't want to accidentally exceed the earnings limit and have benefits reduced. Has anyone been in a similar situation or know how SSA treats Medicaid waiver payments? Thanks so much for any help!
20 comments
Manny Lark
This is a great question that comes up frequently with Medicaid waiver programs. Generally speaking, if income is excluded from gross income for federal income tax purposes, it typically won't count toward the Social Security earnings test limit either. Since Medicaid waiver payments for care of a family member are specifically excluded from taxable income under IRS Notice 2014-7, they shouldn't be counted when SSA determines if you've exceeded your earnings limit. However, I highly recommend getting this confirmed in writing from SSA before making your decision - rules about excluded income can be complex and sometimes misinterpreted by individual SSA representatives.
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Liam Duke
•Thank you so much for explaining that! I've been stressing about this for weeks. I tried calling the SSA office but couldn't get through to anyone who seemed to understand my specific situation. Do you know if I need to provide any special documentation when I apply to make sure they understand these payments shouldn't count?
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Rita Jacobs
my mom was in almost the same situation!!! she got early SS at 62 and was taking care of my brother (he has downs syndrome). the medicaid waiver payments didnt count against her earnings limit. but she had to show some paperwork from medicaid to prove it was exempt income when she applied. this was in Indiana tho not Kentucky so maybe check if its different?
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Liam Duke
•That's so helpful to hear someone had a similar experience! Did your mom have any issues with SSA understanding the situation at first? And do you remember what kind of paperwork she needed to provide? I'll definitely check with KY Medicaid to see if they have something similar.
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Khalid Howes
You really need to be careful with this. I've seen several cases where SSA initially counted Medicaid waiver payments toward the earnings limit because the field office staff wasn't familiar with the IRS exemption. Make sure you bring a copy of IRS Notice 2014-7 with you when you apply, along with documentation from your state's Medicaid waiver program showing you're providing care to a family member in your home. The POMS section that covers excluded income is RS 02505.240 if you want to reference that specifically. Also, have you calculated whether taking benefits at 62 is the best financial decision long-term? Your benefit will be permanently reduced by about 30% compared to your full retirement age benefit. Given your caregiving situation, you might want to run the numbers carefully.
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Liam Duke
•Thank you for the specific references - that's incredibly helpful! I'll definitely bring those with me. And you raise a good point about the reduction. I've been going back and forth on this. My FRA is 67, so waiting would give me a higher monthly amount, but I'm concerned about my current finances and figured getting something now might help...
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Ben Cooper
Just wanted to add my experience... I started taking SS at 62 while helping care for my disabled sister (not through a waiver program though). WHAT A NIGHTMARE dealing with Social Security!!! Took me 5 weeks just to get an appointment, then they calculated everything wrong, then I couldn't reach anyone to fix it. Checks were delayed for months. Not saying this will happen to you but be prepared for frustration. Make sure you get EVERYTHING in writing!!! And keep copies of EVERYTHING!!!
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Liam Duke
•Oh no, that sounds awful! I'm already nervous about the application process - I'm not good with all the bureaucratic stuff and paperwork. I hope my experience is smoother than yours was!
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Naila Gordon
Have you tried using Claimyr to get through to SSA? I was in a similar situation trying to understand how my pension would affect SS benefits. Spent days trying to reach someone. Found this service at claimyr.com that got me through to an actual person at Social Security in about 20 minutes. They have a video showing how it works: https://youtu.be/Z-BRbJw3puU. Saved me hours of frustration and the agent I spoke with was able to give me a direct written answer about my excluded income question.
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Liam Duke
•I've never heard of this service before. I've been trying for days to get through on the phone without success. I'll check out that video - thanks for sharing! Anything to avoid sitting on hold for hours would be helpful right now.
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Cynthia Love
I think everyones forgetting to ask an important question - is your daughter receiving SSI or SSDI benefits herself? If she is, you becoming her paid caregiver through Medicaid might affect HER benefits too, not just yours. SSI has strict income and resource limits. This gets complicated fast when family members are paid caregivers AND receiving benefits themselves.
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Liam Duke
•That's a really good point I should have mentioned! My daughter receives SSDI based on her disability (she qualified before age 22). She doesn't get SSI. We've already worked through how the caregiver arrangement affects her benefits, but I hadn't considered how my retirement might change things from that angle too... this is getting more complicated than I expected.
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Darren Brooks
Everyone keeps talking about the earnings test but nobody mentioned that once you reach your full retirement age, the earnings test goes away completely!! So even IF the Medicaid waiver payments counted (which it sounds like they don't), it would only matter until you reach 67. After that you can earn whatever you want with no reduction in benefits. Just something else to consider in your planning.
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Khalid Howes
•This is accurate. The earnings limit only applies before Full Retirement Age. However, the permanent reduction from claiming early would still remain even after reaching FRA. At 62, the benefit is reduced by approximately 30% permanently compared to claiming at FRA (67 in this case). That reduction needs to be factored into the long-term financial calculation.
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Rita Jacobs
have u checked if your daughter could get higher benefits as a disabled adult child (DAC) once u start collecting retirement? my cousins benefits went up when his dad retired because he could collect on his dads record instead of his own smaller benefit. might be something to look into
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Manny Lark
•This is an excellent point. When a parent begins collecting retirement benefits, their adult disabled child may be eligible for a Child's Insurance Benefit (CIB), also called a Disabled Adult Child (DAC) benefit. This could be up to 50% of the parent's Primary Insurance Amount while the parent is living. It's definitely worth investigating as part of the overall claiming strategy.
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Ben Cooper
I think your best bet is to schedule an appointment with a claims specialist at your local SSA office and bring ALL documentation. Phone calls are hit or miss - sometimes you get someone knowledgeable, sometimes not. But in-person they can actually look at your documents and give better guidance. Just be prepared to wait FOREVER even with an appointment lol 🙄
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Naila Gordon
•This is exactly why I recommended Claimyr. I tried the in-person route first and my local office had a 3-week wait for appointments. When I finally got in, they told me I needed to speak with someone who handles these specific cases and they weren't available that day. Ended up having to call anyway, and Claimyr saved me hours of frustration. But I agree that having all documentation ready is essential no matter how you contact them.
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Khalid Howes
To summarize what's been discussed and add a few more considerations: 1. Medicaid waiver payments for family caregivers are excluded from taxable income (IRS Notice 2014-7) 2. These payments should not count toward the Social Security earnings test 3. Bring documentation including IRS Notice 2014-7 and POMS reference RS 02505.240 4. Consider whether claiming at 62 vs waiting until FRA (67) makes financial sense long-term 5. Investigate whether your daughter could receive higher benefits as a DAC on your record 6. Remember the earnings test only applies until you reach your FRA 7. Document everything and get answers in writing from SSA Given the complexity of your situation, you might also want to consult with a financial advisor who specializes in Social Security claiming strategies, particularly one familiar with disability benefits. Some initial consultations are free or low-cost.
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Liam Duke
•Thank you so much for this helpful summary! This thread has given me so much more to think about than I expected. I'm going to look into the DAC benefits for my daughter first, as that could make a significant difference in our household income. Then I'll schedule that consultation with SSA with all the documentation everyone suggested. I really appreciate everyone's help and experiences!
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