Social Security benefits when autistic child turns 18 - what's next for disabled parent?

Same thing happened with my daughter last year. You need to apply for adult SSI for him BEFORE he turns 18!!! Don't wait til after or there will be a gap in coverage.

Your son needs to apply for SSI (Supplemental Security Income) as an adult with a disability. The key is to start this process about 3 months before his 18th birthday. Since he's already diagnosed with autism, the SSA will conduct an age-18 redetermination to see if he meets the adult disability criteria, which are different from the childhood criteria. His current auxiliary benefits that he receives on your record will end, but if he qualifies for SSI as an adult with a disability, he could receive his own benefits. The evaluation process can take 3-5 months, so starting early is crucial. You'll need medical documentation of his autism and how it affects his ability to work. The 2025 SSI federal benefit rate is higher than previous years, but eligibility also depends on his resources and living arrangements.

My brother with down syndrome got his own check when he turned 18. they look at if he can work a job. its not about the diagnonsus its about can they function in a workplace.

One thing nobody mentioned - the change doesnt happen exactly on his birthday. SS benefits for kids continue until the month AFTER they turn 18. So if his bday is March 15, benefits stop after April payment. Just fyi!

I went through this NIGHTMARE with my daughter last year. Started application 4 months before her birthday and STILL had a 3-month gap with no benefits because SSA kept losing our paperwork and canceling appointments!!! If you've been trying to call and getting nowhere, try Claimyr (claimyr.com). My friend recommended it after I was in tears from being on hold for 4+ hours. They somehow get you through to an actual SSA person within minutes. Totally saved my sanity. You can see how it works at https://youtu.be/Z-BRbJw3puU Don't wait for that appointment 2 months away - you need to get this process started ASAP.

I've worked with several families in your situation through our disability advocacy center. Here's a practical checklist for you: 1. Request an appointment for an age-18 redetermination at least 90 days before his birthday 2. Gather recent medical documentation (within the last year) from all treating providers 3. Get documentation from his school about accommodations and functional limitations 4. Complete the Adult Disability Report (SSA-3368) and Adult Function Report (SSA-3373) 5. If he has no income or assets of his own, he'll likely qualify for the maximum SSI benefit ($943/month for 2025) Due to his existing juvenile benefits, SSA should automatically initiate the age-18 redetermination, but don't rely on this - be proactive and contact them directly.

Forgot to mention - make sure your income and household situation is documented correctly. If he lives with you, they'll count part of your income against his SSI amount. Its called "in-kind support and maintenance" and can reduce his benefit.

he might also qualify for medicad when he gets ssi. my brother got both.

THE SYSTEM IS RIGGED AGAINST US!! My daughter has severe disabilities and they DENIED her adult benefits claiming she could work!!! She can barely feed herself! We had to hire a lawyer and fight for 19 MONTHS to get benefits reinstated. Start the process EARLY and DOCUMENT EVERYTHING!!!

good luck! the wait times for decisions are crazy now after covid. my nephew waited 7 months!

Thank you all so much for the advice! I'm going to start gathering all his documentation right away and try that Claimyr service to get through to SSA. I feel much more prepared now about what to expect and what we need to do. This community is so helpful!

I'm going through something similar with my 17-year-old daughter who has intellectual disabilities. From what I've learned talking to other parents, the key is to start the SSI application process at least 3-4 months before the 18th birthday. One thing that really helped us was connecting with our state's developmental disabilities services office - they often have benefits counselors who can walk you through the whole process and help with paperwork. Also, if your son is still in school, ask his special education team to provide a detailed report on his functional limitations and support needs. This documentation can be really valuable for the SSI determination. The transition from child benefits to adult SSI can be scary, but you're asking the right questions and getting good advice here. Don't hesitate to advocate strongly for your son - you know his needs better than anyone!

The developmental disabilities services office can be a huge help! In most states, they have benefits specialists who will actually sit down with you and help complete the SSI application forms. They know exactly what documentation SSA is looking for and can help you present your son's case in the strongest way possible. Some offices even have staff who will accompany you to SSA appointments or help with appeals if needed. The services are usually free since they're funded by the state. You can typically find your local office by searching "[your state] developmental disabilities services" or calling 211 for referrals. Also, don't forget to ask about other support services your son might be eligible for as an adult - things like vocational rehabilitation, supported employment programs, or independent living services. The transition to adulthood opens up a whole new set of potential resources beyond just SSI.

I'm new to this community but wanted to share what I learned when my nephew went through this transition last year. One thing that really caught us off guard was that even though the SSI application process can take months, if he's approved, the benefits are backdated to the application date - not to when his child benefits ended. So there's often still a gap period with no income even if everything goes smoothly. We found it helpful to start building a small emergency fund if possible during the months leading up to his 18th birthday, just to cover basic needs during any benefit gap. Also, some local food banks and disability organizations have emergency assistance programs specifically for families going through this transition period. The other thing I wish we'd known earlier is that once he starts receiving adult SSI, there are work incentive programs that allow him to try working part-time without immediately losing benefits. The PASS program (Plan to Achieve Self-Support) can even let him save money for specific goals like education or job training. Just something to keep in mind for the future!

Great question about the work incentive programs! The SSA office will provide basic information during the application process, but honestly their explanations can be pretty limited. I'd recommend contacting your state's Work Incentives Planning and Assistance (WIPA) program - they have benefits counselors who specialize in explaining exactly how work affects SSI and can help create a personalized plan. You can find your local WIPA program at choosework.ssa.gov or by calling 1-866-968-7842. They offer free services and really know the ins and outs of programs like PASS, Ticket to Work, and other incentives that let people with disabilities try employment without losing their safety net. Also, the Red Book (ssa.gov/redbook) is SSA's guide to work incentives - it's a bit technical but has all the details about earning limits and how different programs work together. Starting to understand these options now gives you time to plan for the future when your son might be ready to explore work opportunities.

I'm also going through this transition with my son who has autism and will turn 18 in a few months. Reading through all these responses has been incredibly helpful! I wanted to add one thing I learned from our case worker - if your son receives any services through your state's developmental disabilities waiver program, make sure to notify them about the upcoming transition too. Sometimes there are coordination issues between different benefit programs, and the waiver services coordinator can help ensure there aren't any gaps in his medical coverage or support services during the SSI transition. They may also have additional resources or emergency assistance available if there ends up being a temporary gap in benefits. Also, I second what others said about starting early and documenting everything. We started a binder with copies of all his medical records, school IEPs, and any correspondence with SSA. It's been a lifesaver when different offices ask for the same information multiple times!

I'm currently working as a benefits counselor at our local disability services center and see families navigate this transition regularly. A few additional points that might help: 1. Consider requesting a "protective filing date" if you can't get all documentation together immediately - this essentially holds your place in line while you gather required paperwork. 2. If your son has any history of mental health treatment (anxiety, depression often co-occur with autism), make sure those records are included. SSA evaluates the combined impact of all conditions. 3. Keep track of his daily routine and what assistance he needs - things like meal preparation, medication management, money handling, transportation. This functional information is often more important than the diagnosis itself. 4. Don't be discouraged if the initial decision is a denial - the appeals process has higher approval rates, especially with proper documentation and representation. The transition is stressful, but with early preparation and the right support, most young adults with autism who need ongoing support do qualify for adult SSI benefits. You're being proactive by asking these questions now!

As someone who went through this exact transition with my autistic daughter two years ago, I want to emphasize something that really helped us - start keeping a detailed "Activities of Daily Living" journal RIGHT NOW. Document every single thing your son needs help with over the course of a week: Does he need reminders to shower? Help managing his schedule? Assistance with grocery shopping or meal planning? Problems with social interactions at work or school? The SSA disability examiners really focus on functional capacity, and having concrete examples of daily limitations is incredibly powerful. We kept a simple notebook for about a month before the application, writing down things like "needed help understanding bus schedule," "required step-by-step guidance to prepare a sandwich," "became overwhelmed and had meltdown when routine changed." This documentation was crucial during the interview process because it showed the real-world impact of his autism beyond just the medical diagnosis. The examiner specifically asked for examples of daily challenges, and we had pages of specific incidents to reference. Also, if your son has any repetitive behaviors, sensory issues, or communication difficulties that would interfere with work, make sure those are thoroughly documented by his doctors. Good luck - you're already ahead of the game by starting this process early!