Will my nursing home take all my SSDI money if I'm approved? Only $30 left per month?

Unfortunately, what you heard is partially true. This is called the Personal Needs Allowance (PNA). If you're in a Medicaid-funded long-term care facility and receive SSDI, most states require that your benefits go toward the cost of your care, minus the small personal needs allowance you mentioned. The exact amount varies by state, but $30-60 per month is common. This is because Medicaid is covering the substantial costs of your care, and they consider your SSDI as income that should contribute to those expenses.

My mom went thru this EXACT thing!!! The nursing home took practically EVERYTHING when her SSDI was approved. She literally only got like $40 a month for "personal needs" and that had to cover her cell phone, haircuts, everything!! It made her feel like she had no independence left. The whole system is CRUEL to disabled people - take away our money and make us feel like children who have to ask permission for everything. 😡

This depends on your specific situation. If your long-term care is being paid for by Medicaid (not Medicare), then yes, most of your SSDI would go to the facility with you keeping only the Personal Needs Allowance (PNA). However, there are some important exceptions and strategies to consider: 1. If you're in the facility short-term or for rehabilitation, different rules may apply. 2. If you have certain qualified expenses like uncovered medical costs or are maintaining a home you plan to return to, you may be able to keep more of your benefits. 3. Some states have higher PNA amounts than others. 4. If you're participating in a work incentive program or have an approved PASS plan, you may be able to set aside some income. I'd recommend speaking with a benefits counselor at your local Area Agency on Aging or a Medicaid specialist who can examine your specific situation.

wait does this apply to regular SS retirement too? my aunt is in nursing home and gets ss retirement. does she only get $30 too??

I went through this exact situation last year, and what you heard is mostly correct. When I was approved for SSDI while in a long-term care facility on Medicaid, most of my benefits went to the facility. In my state (Michigan), I was allowed to keep $44 per month as my "personal needs allowance." What helped me tremendously was getting in touch with a benefits counselor who explained everything clearly. I had been trying for WEEKS to reach someone at SSA to explain my options, but the phone lines were always jammed. I finally used a service called Claimyr (claimyr.com) that got me through to an SSA representative within 20 minutes! They have a video showing how it works: https://youtu.be/Z-BRbJw3puU The SSA rep explained some exemptions I qualified for that let me keep a bit more money each month. Definitely worth checking into for your specific situation.

My sister was told the same thing but when she actually got approved they only took part of her money not all of it. Every situation is different! Don't panic yet

To address your follow-up question about PASS plans - PASS stands for Plan to Achieve Self-Support. It's primarily for SSI recipients who are trying to return to work, so it may not apply in your situation if you're receiving SSDI and not planning/able to return to employment. Regarding increasing your personal needs allowance, a few options: 1. Some states allow for a higher PNA if you have certain qualified expenses. 2. If you have uncovered medical expenses, sometimes those can be paid from your benefits before the nursing home portion is calculated. 3. If you're participating in certain rehabilitation programs, you might qualify for an increased allowance. 4. Some facilities have hardship exemptions. Your best approach would be to speak with a benefits counselor or elder law attorney who specializes in Medicaid rules in your state. Many offer free initial consultations.

Since you mentioned you're on Medicaid, I should add that the transfer of your SSDI to the facility isn't automatic - it's handled through a process called "Representative Payee" designation. When your SSDI is approved, you'll likely be asked if you need a Representative Payee (someone to manage your benefits). The facility may become your Rep Payee, or they may work with you to ensure the appropriate portion goes to them while you maintain control of your personal needs allowance. I'd recommend contacting your local: 1. Disability Rights Organization 2. Area Agency on Aging 3. Medicaid office case manager They can provide guidance specific to your state's regulations and help ensure your rights are protected in this process. Every state implements these rules somewhat differently, and knowing the specific provisions in your location is important.

After my experience with this, I'd suggest two important things: 1. Get documentation from the facility about exactly how much they'll take and what their policy is. Some facilities are better than others about transparency. 2. Find out what items your facility provides vs. what you'll need to buy with your personal needs allowance. My facility provided basic toiletries, but anything name-brand or specialty items (like my specific shampoo for sensitive skin) had to come from my allowance. Also, check if your state has any special programs for people in your situation. In my case, I found out our state had a small additional stipend program I qualified for that gave me about $25 extra per month - not much, but it made a difference.

To answer the question about Representative Payees: No, facilities cannot automatically become someone's Rep Payee without proper determination. You're correct that Rep Payees are primarily for those who cannot manage their own finances due to their condition. However, in practice, many facilities strongly encourage residents to either: 1. Set up a Rep Payee arrangement (which could be the facility or another trusted person) 2. Establish automatic transfers from their benefit account to the facility If you are mentally capable of managing your own benefits, you have the right to receive your SSDI directly and then pay the required portion to the facility. However, this creates an obligation to make those payments properly, and failure to do so could potentially impact your Medicaid eligibility. Some facilities prefer the Rep Payee arrangement simply because it ensures they receive payment consistently, but it's not automatically required unless there's a determination that the beneficiary cannot manage their own funds.

The $30 thing is called a personal needs allowance. my mom works in a care facility and says its different amounts in different states. some states give more like $50 or even $70. which state are you in?

If you decide to manage your own benefits rather than having a Rep Payee, you would typically work with the facility's billing department and your Medicaid case manager to determine the exact amount you need to pay. They would provide you with a statement showing: 1. The total cost of your care 2. The amount Medicaid is covering 3. Your required contribution (which would be your SSDI minus your personal needs allowance) You would then be responsible for paying that amount to the facility each month. Some facilities offer direct deposit options, while others accept checks or other payment methods. Regarding advocacy organizations, I would recommend contacting: 1. Your local Legal Aid office, which often has elder law/benefits specialists 2. The Disability Rights organization in your state 3. The Long-Term Care Ombudsman program in your area (they specifically advocate for people in facilities) All of these services are typically free and can provide valuable guidance specific to your state's regulations.

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!

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!