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.