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I'm sorry you're going through this difficult situation. As others have mentioned, the personal needs allowance system can feel really limiting. One thing I'd add that might help is to ask your facility's social worker about any charitable programs or assistance they might offer. Some facilities have hardship funds or partnerships with local organizations that can help with small personal expenses like phone bills or personal care items. Also, if you have family or friends who visit, they might be able to help by bringing you certain items directly rather than having you purchase them with your limited allowance. It's not a perfect solution, but every little bit can help stretch that small monthly amount. I hope the ombudsman can provide some good guidance for your specific situation!
That's a really thoughtful suggestion about asking the social worker about charitable programs! I hadn't even thought about that possibility. It would be great if there are local organizations that help with things like phone bills since staying connected with family is so important. I'll definitely ask about that when I meet with the ombudsman. Thank you for the practical advice!
I'm really sorry you're facing this stressful situation. The uncertainty while waiting for SSDI approval is hard enough without worrying about what happens to your benefits afterward. One additional resource that might help is contacting your state's SHIP program (State Health Insurance Assistance Program). They provide free counseling specifically about Medicare, Medicaid, and related benefits issues. Even though SSDI isn't Medicare initially, they often have expertise in how different programs interact with Medicaid-funded long-term care. Also, keep in mind that if you do get approved, you may be eligible for retroactive benefits going back to when you first applied in May 2024. While most of those would likely go to the facility as well, having that lump sum could help cover some one-time expenses you've been putting off. The system definitely feels unfair, but knowing your rights and having advocates on your side can make a real difference in navigating it. Best of luck with your approval process!
Congratulations on getting your first payment! That's such great news. For anyone else reading this thread who might be in a similar situation, this is a perfect example of how the SSA process typically works - it feels like forever when you're waiting, but most applications do process within that 6-8 week timeframe. And Zainab, that retroactive payment is going to be a nice chunk of change! January and February at $3,245 each - that's over $6,000 coming your way. Definitely a good reward for your patience. Thanks for updating us on the outcome!
That's fantastic news! So happy to hear everything worked out. I'm actually in a similar boat - just turned 70 last month and applied online but haven't heard anything yet. This thread has been incredibly helpful and reassuring. Knowing that 6-8 weeks is normal and seeing a real success story makes me feel so much better about waiting. Thanks to everyone who shared their experiences!
Thank you everyone for the helpful information! I had no idea there was such a big difference between taking widow benefits at 62 versus waiting until my full retirement age. I've made an appointment with SSA next month, and I'm going to specifically ask for a written comparison of what I'd receive at different ages. I'll make sure they understand I'm currently on CIC benefits too. It sounds like waiting until my FRA could mean several hundred more dollars each month for the rest of my life, which would make a huge difference for us. I'll update this thread after my appointment in case it helps anyone else in a similar situation.
Glad the information helped! Just a heads-up - those SSA appointments can be rescheduled or have long wait times. If you run into trouble closer to your appointment date, remember the Claimyr option I mentioned earlier. Good luck with everything!
As someone who recently navigated this exact situation, I want to emphasize how important it is to understand the timing. I was also receiving CIC benefits while caring for my disabled adult child, and when I turned 62, I was initially told by an SSA representative that I should switch to widow benefits immediately. Fortunately, I did more research first and discovered that waiting until my Full Retirement Age (which was 66 and 8 months for me) would give me the full 100% of my late husband's benefit instead of just 82.5% at age 62. That difference was about $350 per month for life! One thing I'd add that others haven't mentioned - make sure you ask about any potential Cost of Living Adjustments (COLAs) that might apply to your husband's benefit record between now and when you switch. These can slightly increase the base amount your widow benefits will be calculated from. Also, keep detailed records of all your communications with SSA. I had to correct errors in my file twice during the process.
Based on what you've shared, your friend needs to take three specific actions: 1. Report his blindness to SSA immediately - this is considered a change in medical condition 2. Request an evaluation for SSDI benefits based on his work history as a janitor for 20+ years 3. Ask specifically about concurrent benefits (receiving both SSI and SSDI) which may apply in his case Arizona does not offer a state supplement to SSI (unlike California mentioned above), so maximizing his federal benefits is especially important. When he speaks with SSA, he should specifically ask about the Blind Work Expense (BWE) exclusions if he has any income, and request information about any additional programs for which his blindness might qualify him. The difference between the standard SSI payment ($943/month) and potential SSDI benefits based on his work history could be substantial, potentially doubling his monthly income if he qualifies for SSDI at a decent rate.
Just wanted to add that when your friend contacts SSA, he should bring ALL his medical documentation about his macular degeneration and legal blindness diagnosis. The SSA has very specific criteria for legal blindness (20/200 vision or worse in the better eye, or visual field of 20 degrees or less), so having the official documentation from his eye doctor will be crucial. Also, since he worked as a janitor for 20+ years, there's a good chance he has enough work credits for SSDI. SSDI benefits are calculated based on his lifetime earnings, so even modest-paying jobs can result in meaningful benefits if he worked consistently. The combination of SSDI plus potentially a small SSI supplement could definitely get him closer to that $1,900 range you mentioned. One more tip - if he has trouble getting through to SSA by phone, he can also submit a written report of his medical condition change by mailing it to his local field office. Sometimes that's actually faster than trying to get through on the phone!
Omar Mahmoud
my aunt went thru this last year. she got the spousal increase but had to fight for backpay. they only gave her 6 months backpay even tho she shoulda been getting it for 2+ years! make sure u ask about retroactive benefits when u apply
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Ravi Kapoor
•That's good to know - I'll definitely ask about retroactive payments. Really appreciate the tip!
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Emma Morales
I'm in a very similar situation - took my benefits at 62 and just turned 64. Reading through all these responses has been really eye-opening! I had no idea about the spousal benefits potentially being available. My husband's benefit is about $2,800/month and mine is only $1,100, so it sounds like I should definitely look into this. One question for those who've successfully gotten the spousal benefit - did you need to bring any specific documentation when you applied, or do they have everything they need in their system already? I want to be prepared when I call so I don't waste the opportunity if I actually get through to someone! Also, @Sean Murphy, thanks for mentioning that Claimyr service - I'm definitely going to look into that since the thought of sitting on hold for hours is making me put this off.
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