Disabled adult son no longer on SSI - are $2000 asset limits gone and is ABLE account still needed?

Yes, what the SSA told you is accurate. The $2,000 asset limit only applies to SSI (Supplemental Security Income), not to SSDI (Social Security Disability Insurance) or DAC (Disabled Adult Child) benefits. When your son was receiving SSI, he was subject to those restrictions, but now that he's only receiving the Social Security disability benefit as a DAC on your husband's record, those asset restrictions no longer apply. However, I would caution you about the special needs trust and ABLE account. While they're not necessary for maintaining his Social Security benefits, they might still be important if he might need means-tested government programs in the future. Without Medicaid, how will his healthcare needs be covered?

when my daughter went from SSI to just regular disability we put all her money in a normal bank account. SSA said it was fine. she has like $4500 saved up now and nobody has said anything. the $2000 thing is just for SSI

I went through something very similar with my brother last year. It's true that the $2,000 asset limit no longer applies when someone is only receiving SSDI/DAC benefits. However, I STRONGLY recommend keeping the special needs trust AND setting up that ABLE account anyway. Here's why: 1. If his SSDI payment is low, he might need to reapply for SSI in the future 2. There are other means-tested programs besides Medicaid that he might need (food assistance, housing subsidies, etc.) 3. The ABLE account gives tax advantages for saving for disability-related expenses Regarding Medicaid - this is a huge loss. As someone mentioned, he'll get Medicare after 24 months on SSDI, but that has co-pays and doesn't cover everything Medicaid does. Some states have Medicaid buy-in programs for working people with disabilities, even if they're over income/asset limits for regular Medicaid. Might be worth checking if your state has this option.

The SSA agent is right about the asset limits, but WRONG about what you should do!!!! I've seen this EXACT situation before and people make HUGE mistakes by dismantling their financial protections too quickly. SSI has the $2000 limit, SSDI doesn't. BUT here's what they don't tell you - if his SSDI benefit is less than the SSI federal benefit rate+state supplement (if any), he might still be eligible for SOME SSI, which means he'd STILL be subject to the asset limit!!! Also, losing Medicaid is a MASSIVE problem that most people don't fully understand until it's too late. Call your local Medicaid office IMMEDIATELY! In many states, there are pathways to Medicaid that don't involve SSI. Don't assume the SSA knows about these - they often DON'T!

You might want to try Claimyr to get through to a Social Security agent directly to confirm all these details. I had similar questions when my daughter transitioned from SSI to SSDI, and I kept getting different answers from different people. I used claimyr.com to get through to SSA without waiting on hold for hours, and they scheduled a call back within 1 hour. They have a video explaining how it works: https://youtu.be/Z-BRbJw3puU Getting official confirmation from SSA in writing about the asset limits was crucial for our peace of mind. I'd also recommend asking specifically about your son's eligibility for any SSI at all, and get written clarification about his Medicaid status.

congrats on not having to deal with the $2000 limit anymore! that rule made life so stressful for us for years. every birthday and christmas was a nightmare trying to make sure relatives didnt give too much money. wish the government would update that ridiculous limit!

Wait I'm confused about something - is SSDI the same as disabled adult child benefits? My son gets disability benefits on his dad's record but we were told those ARE affected by assets. Now I'm worried we've been given wrong info.

about the medicaid thing my sister lost medicaid when she got more ssdi but then 2 months later got medicare. she said medicare works at most doctors now so maybe its not as bad as you think??

One thing no one has mentioned - you should check if your state has a "Medicaid spend-down" program (sometimes called Medically Needy). This allows people with higher incomes to qualify for Medicaid if they have high medical expenses. Essentially, you "spend down" your income to the eligibility level by incurring medical expenses. This might be an option during the Medicare waiting period. Regarding the ABLE account, even without SSI asset restrictions, it still provides tax advantages that a regular savings account doesn't. Earnings grow tax-free when used for qualified disability expenses. Think of it like a 529 college savings plan, but for disability expenses.

I'm going through a very similar situation with my 26-year-old daughter right now! She just transitioned from SSI+SSDI to DAC benefits only when my husband started collecting his retirement. The asset limit relief is real and such a huge weight off our shoulders, but the Medicaid loss is terrifying. One thing that helped us was contacting a disability benefits attorney for a consultation - many offer free initial consultations. They explained some state-specific Medicaid programs we didn't know existed. Also, don't forget about COBRA if your son was covered under anyone's employer health plan recently - it's expensive but might bridge the gap until Medicare kicks in. Keep that special needs trust! Even our attorney said it's better to have it and not need it than need it and not have it. The rules change so often, and you never know what the future holds.

I'm a newcomer here but wanted to share my experience since this hits close to home. My nephew went through almost the exact same transition last year - from SSI to DAC benefits when his mom started collecting Social Security. The asset limit freedom is real and such a relief! We were constantly stressed about birthday money and small inheritances before. However, I'd echo what others have said about keeping your financial protections in place. The special needs trust and ABLE account aren't just about SSI compliance - they offer other benefits and flexibility. For the Medicaid gap, definitely explore every option your state offers. We found that our state had a "Katie Beckett" waiver program that helped bridge coverage during the Medicare waiting period. Each state is different, so it's worth calling your local disability resource center or Area Agency on Aging for guidance. One practical tip: start documenting all his medical expenses now, even if you're paying out of pocket. If you do find a spend-down program or need to appeal any coverage decisions later, having detailed records will be invaluable. Hang in there - this transition is confusing but you're asking all the right questions!

I'm new to this community but wanted to share some additional insights that might help. As someone who works in disability advocacy, I see this SSI-to-DAC transition fairly often, and you're absolutely right to be asking these questions. A few points that haven't been fully covered: 1. **Medicare vs. Medicaid coverage differences**: Even when Medicare kicks in after 24 months, it doesn't cover everything Medicaid did. Medicare has gaps in long-term care, some therapies, and dental/vision coverage that Medicaid typically covers fully. 2. **State-specific programs**: Many states have "1915(c) waivers" or similar programs that can provide Medicaid coverage for people with disabilities who are over the income limits. These are often called "HCBS waivers" (Home and Community-Based Services). 3. **ABLE account annual contribution limits**: For 2024, the limit is $18,000 per year (same as gift tax exclusion), but if your son has earned income, he can contribute an additional amount up to the federal poverty level. 4. **Work incentives**: Since he's no longer on SSI, he won't have access to SSI work incentives like PASS plans, but there are still SSDI work incentives that might apply if he increases his work hours. I'd strongly recommend contacting your state's Protection & Advocacy agency - they provide free legal services for people with disabilities and can help navigate these transitions. They often know about programs that even SSA staff aren't fully aware of. Keep advocating for your son - you're doing great by asking these detailed questions!

As a newcomer to this community, I wanted to thank everyone for sharing such detailed and helpful information about this transition. Reading through all these experiences has been incredibly valuable as I'm facing a similar situation with my own disabled adult child. One thing I haven't seen mentioned yet is the importance of requesting a written determination from SSA about your son's eligibility status. When my family went through a benefits change last year, we learned the hard way that verbal confirmations aren't always reliable - different representatives sometimes give conflicting information. Having everything documented in writing became crucial when we needed to reference the decisions later. Also, regarding the healthcare coverage gap, you might want to check if your son qualifies for any premium tax credits for marketplace insurance during the Medicare waiting period. The income thresholds for these credits are different from Medicaid eligibility, and even though his SSDI income might disqualify him from Medicaid, he could still get help with marketplace premiums. It's clear from everyone's responses that keeping your existing protections (the special needs trust and moving forward with the ABLE account) is the smart move, even without the SSI asset restrictions. The peace of mind alone seems worth it, and as several people mentioned, benefit rules can change. Thank you all for creating such a supportive and informative community - it really helps to know others have successfully navigated these complex transitions!

As a newcomer to this community, I'm finding this discussion incredibly helpful since we're potentially facing a similar situation soon. My husband is considering claiming his Social Security benefits early, and our 22-year-old disabled son currently receives SSI. Reading through everyone's experiences, it sounds like the asset limit relief is genuine, but the Medicaid loss could be devastating. For those who've been through this transition, how long did it typically take to get clarity on alternative Medicaid programs in your state? I'm wondering if we should start researching these options now before my husband actually files for benefits. Also, I'm curious - did anyone find that the DAC benefit amount was significantly different from what their child was receiving in combined SSI+SSDI? We're trying to figure out if this change would be financially beneficial overall, especially considering the potential healthcare costs during the Medicare waiting period. Thank you all for sharing your experiences so openly. It's clear this community is a valuable resource for navigating these complex situations!

As a newcomer to this community, I wanted to share some additional resources that might be helpful during this transition. I recently went through something similar with my disabled adult daughter when she aged out of certain programs. One thing I discovered that hasn't been mentioned yet is contacting your state's Independent Living Center - they often have benefits counselors who specialize in these SSI-to-SSDI transitions and can help you navigate the Medicaid alternatives specific to your state. They're typically free services and really know the ins and outs of local programs. Also, regarding the healthcare gap, some states have "transitional Medicaid" programs that can provide temporary coverage during benefit changes. It's not available everywhere, but worth asking about when you call your Medicaid office. I'd also suggest keeping detailed records of this entire transition process - dates of conversations, names of representatives you spoke with, and any written correspondence. If issues arise later, having a paper trail can be invaluable. The consensus here about maintaining your special needs trust and proceeding with the ABLE account makes perfect sense. Even beyond potential future benefit needs, these tools offer flexibility and protection that could be valuable in unexpected situations. Thank you everyone for creating such a supportive space to share these complex experiences!

As a newcomer to this community, I'm grateful to find such a supportive and knowledgeable group! I'm currently facing a similar situation - my 25-year-old disabled daughter has been receiving SSI+SSDI, and I'm approaching the age where I might start collecting Social Security myself. Reading through all these experiences has been incredibly eye-opening. I had no idea about the potential healthcare coverage gap or the various state-specific Medicaid programs that might be available. The consensus about keeping financial protections like special needs trusts and ABLE accounts in place makes complete sense, especially given how frequently these rules seem to change. One question I have that I don't think has been addressed yet - for those who went through this transition, did you find that your state's disability determination services or vocational rehabilitation programs were affected at all? My daughter receives some employment support services, and I'm wondering if those might change when her benefit source changes from SSI to DAC. Also, has anyone had experience with appealing Medicaid terminations during this type of transition? I'm wondering if there are situations where the termination might be incorrect or if there are appeal rights that could buy time to explore other coverage options. Thank you all for sharing so openly about these complex situations - it's clear this community is an invaluable resource for families navigating the disability benefits system!

As a newcomer to this community, I wanted to add my perspective on maintaining the ABLE account even without SSI restrictions. Beyond the asset protection benefits others have mentioned, ABLE accounts offer some unique advantages that regular savings accounts don't provide. First, qualified distributions from ABLE accounts don't count as income for most federal benefit programs - this could be important if your son ever needs to apply for other assistance programs in the future. Second, many states offer state tax deductions for ABLE contributions, which can provide additional savings. Also, regarding the Medicaid gap, I'd suggest looking into whether your state participates in the ABLE to Work program. This allows people with ABLE accounts who are working to contribute above the normal annual limit (up to the federal poverty level) from their earned income. Since your son works part-time, this could be relevant. One practical tip that helped our family during a similar transition: create a comprehensive file with all benefit determination letters, medical records, and correspondence. When you're dealing with multiple agencies (SSA, Medicaid, VR services), having everything organized in one place makes advocating much easier. The learning curve is steep with these benefit transitions, but you're asking all the right questions and this community is an excellent resource for navigating the complexity!

As a newcomer to this community, I wanted to share some insights from our recent experience with a similar transition. My 23-year-old son just went through the same change from SSI to DAC benefits when my husband started collecting Social Security. The asset limit relief is absolutely real and such a huge psychological burden lifted! We had been so stressed about managing his finances within that $2,000 limit. However, I'd strongly echo what others have said about keeping your financial protections in place. We kept our special needs trust active and went ahead with opening an ABLE account, and I'm glad we did. Regarding the healthcare gap, one thing that really helped us was contacting our state's Aging and Disability Services department directly (not just the regular Medicaid office). They knew about programs that the standard Medicaid representatives weren't familiar with. We discovered a state-funded program for adults with disabilities that helped bridge coverage during the Medicare waiting period. Also, don't forget to ask SSA for a written benefit verification letter showing his new benefit type and amount - you'll need this for various applications and appeals. Some agencies and programs have different eligibility criteria for DAC benefits versus SSDI, so having official documentation helps clarify his status. The transition is definitely complex, but you're doing everything right by asking these detailed questions and planning ahead. This community has been invaluable for our family during similar changes!

As a newcomer to this community, I'm finding this discussion incredibly helpful since my family is in the early stages of a similar situation. My husband and I are both approaching retirement age, and our 21-year-old son currently receives SSI benefits due to his intellectual disability. Reading through everyone's experiences has really highlighted how important it is to plan ahead for this transition. The asset limit relief sounds wonderful - we've been so careful about keeping his savings under $2,000 that we've probably been too conservative with financial planning. But the potential loss of Medicaid coverage is definitely concerning, especially since his medical needs are significant. I'm particularly grateful for all the specific resources people have mentioned - the Independent Living Centers, Protection & Advocacy agencies, and state-specific programs I'd never heard of. It's clear that doing your own research and not just relying on what SSA tells you is crucial. One question I have is about timing - for those who went through this transition, did you have any control over when it happened, or did it automatically occur as soon as the parent started collecting Social Security? I'm wondering if there's any strategic timing we should consider before my husband files for his benefits. Thank you all for creating such a supportive and informative community. It's reassuring to know there are people who've successfully navigated these complex changes and are willing to share their knowledge with newcomers like me!

As a newcomer to this community, I wanted to share some additional considerations that might be helpful during this transition. My disabled adult daughter went through a similar change last year when my spouse started collecting Social Security. One thing I learned that hasn't been mentioned yet is the importance of understanding how the DAC benefit calculation works. Unlike SSDI which is based on your own work history, DAC benefits are calculated as a percentage of the parent's Primary Insurance Amount (PIA). This means the benefit amount can sometimes be higher than what someone received in combined SSI+SSDI, but it also means it's tied to the parent's earnings record. Also, regarding work incentives, while your son loses access to SSI work incentives like PASS plans, he may still be eligible for SSDI work incentives such as the Trial Work Period and Extended Period of Eligibility if he increases his work hours. The income thresholds are different, but these can still provide important protections for people who want to work more. I'd strongly recommend getting a consultation with a SOAR-certified benefits counselor (SSI/SSDI Outreach, Access, and Recovery) if one is available in your area. They specialize in these complex benefit transitions and often know about resources that general SSA staff might not mention. The healthcare coverage gap is definitely the biggest challenge, but as others have mentioned, there are often state-specific solutions that aren't immediately obvious. Don't give up if the first few people you talk to don't have answers - keep advocating and asking to speak with supervisors or specialists.

As a newcomer to this community, I wanted to share some perspective from someone who recently navigated a very similar transition with my 26-year-old disabled son. Reading through all these experiences brings back memories of how overwhelming this process felt initially, but also how much clearer things became with proper research and advocacy. One aspect I haven't seen fully addressed is the importance of understanding your appeal rights throughout this entire process. When my son's SSI was terminated due to the DAC transition, we received multiple notices from different agencies (SSA, Medicaid, food assistance programs) - and not all of them were processed correctly. Having appeal rights for each program meant we could challenge incorrect terminations while continuing to receive benefits during the appeal process. I'd also suggest creating a timeline of when different changes take effect. In our case, the SSI termination was immediate when the DAC benefits started, but Medicaid had a different end date, and Medicare eligibility had its own 24-month countdown. Understanding these different timelines helped us plan better for coverage gaps and financial changes. Regarding the special needs trust and ABLE account question - we kept both and I'm so glad we did. Even beyond potential future benefit needs, the ABLE account has been incredibly useful for managing disability-related expenses with tax advantages, and the trust provides flexibility for larger purchases and long-term planning. The learning curve is steep, but you're asking all the right questions and this community is an amazing resource. Don't hesitate to keep advocating and asking for second opinions when something doesn't sound right - you know your son's needs better than anyone!