How to Avoid Getting a Representative Payee

Art: Robin Mead

A representative payee is someone who is designated to manage your Social Security disability money. Not everyone has a representative payee. You will only have a payee if Social Security decides you cannot manage your own money.

Having someone manage your money and bills sounds great, but it does not always work out great. The reviews are mixed. Reports from readers:

Some People Like Having a Payee 

Some people like having a representative payee, because it is helpful and less stressful to have someone else handle finances. A representative payee can help making sure your basic bills like food and rent get paid.

A payee can be a good idea if you may spend money you need for basic living expenses. For example, if you have a gambling addiction, or sometimes goes into manic states and spends or give away your money.

A payee can also be a good idea if your illness or symptoms are so severe that you are unable to pay your bills, and cannot ask for help, and cannot direct others to help you.

Some People Like Having a Payee… At First

Some people like having a rep payee at first, but later on that person dies, moves or does not want to continue doing it. Then they wind up with a rep payee they do not like.

Some People Hate Having a Payee

And some people (most people) hate having a rep payee. They hate not being able to make their own financial decisions, and they sometimes feel confused or resentful about how their money is being spent.

When Does This Decision Get Made?

The decision about representative payees gets made while you are applying, or sometimes right after you get approved.

If you don’t want a representative payee, the best time to address this is while you are still applying and/or right after approval. If you wait until after the decision has been made, you will have a lot less options.

Who Gets a Representative Payee

Sometimes people with the following circumstances are assigned representative payees. But not always:

  • Serious mental illness
  • Developmental disabilities
  • Drug or alcohol abuse
  • Alzheimers, Traumatic Brian Injury, or other disabling cognitive impairments
  • Under age 18
  • People who have been declared incompetent by a court
  • People who want/request to have a payee

If your primary disability is physical, you probably do not have to worry about getting a rep payee, unless your condition is so severe that you are completely unable to manage finances or direct anyone to help you.

Special Circumstances: Turning 18

Many people get assigned a representative payee when they turn 18. Sometimes this is a good thing and other times it does not work out well in the long run.

Sometimes this happens because the person genuinely needs a representative payee and this is the best possible outcome. Other times this happens because a parent is trying to help their child by recommending they have a payee and offering to be the payee.

If you are a parent in the process of making this decision, you may wish to give it a lot of thought and consideration and talk it over with your child. Some parents decide that instead of becoming a payee, they will instead offer to help support and train their child to handle their own financial decision making, so the child will be able to have more choice and independence in their future.

It is an important decision. Only you know what is best for your family, and the right choice is different in every case.

Who Decides if I Need a Representative Payee

The decision can be made by any of these people, or by some combination:

  • Your doctor – If your doctor writes something in your medical records about your ability to manage your money.
  • Your doctor – If you ask your doctor to fill out a mental RFC form for you. Many RFC forms include a question about your ability to handle money.
  • Your doctor – If you request that your doctor write a brief letter for you stating that you are able to manage your own finances, and you present this letter to Social Security.
  • The Social Security doctor – If you meet with a Social Security psychiatrist or psychologist, they will write their opinion about this question. They may discuss it with you before making a decision.
  • The judge – If you have a hearing with a judge, the judge may make a decision about representative payee status, and this may be written in your award letter. The judge may discuss this with you before making a decision.
  • Social Security staff – After you are approved, you will be contacted for an interview to review financial questions. This person may ask you questions about your ability to handle finances and make a decision.
  • You – If you request a representative payee.
  • You – If you tell any of the people above that you cannot manage your finances responsibly.

Is the Decision Always Correct?

Nope. Many people report that representative payee status is applied unevenly. It may somewhat depend on which worker you happen to meet with the day of your payee interview. Some Social Security workers are more inclined to try to give out representative payee status, and other workers are less likely to do this.

We have heard from readers who were perfectly capable of handling their money, yet still got assigned rep payees. And we have heard from other readers who regularly took risks with their money (such as giving all their rent money away to charity), but never got assigned a payee.

What Questions Will I Be Asked?

It is possible that at some point a doctor or someone at Social Security may ask you some questions to see if you are capable of handling your money. Sample questions:

  • Do you know what bills you have each month?
  • How have you handled your money in the past?
  • If you have money left over, what would you do with it?
  • What are the most important bills to pay?
  • Who pays my bills?
  • Am I able to pay them by myself?
  • Do I take medications? Do I ever forget to take them?

“Someone will handle my money? That sounds good!”

Some people prefer to have a representative payee and request to have one. If this is what you want, you are free to make this request anytime.

However, you also have another option: If you have a person who you trust  to manage your finances, you do not have to do this through Social Security. You make your own arrangement for this person to help you. Here’s an example of someone who regretted getting representative payee status:

Lilac’s Story

Lilac told Social Security that she needed a representative payee and requested her mom be her payee. This worked well for some years. Then Lilac’s mom passed away.

Lilac was older now and felt she could control her own money, but it was too late. She already had representative payee status and felt too afraid to risk her benefits by trying to undo it.

After Lilac’s mom died, Lilac didn’t have someone else she trusted to ask to be her payee, so Social Security assigned an agency to be Lilac’s representative payee. Lilac hated working with the agency. She felt she never had enough money and never fully understood what was happening to her money, plus the agency charged her a fee each month.

“I don’t want a rep payee!”

If you have no problems managing your money, and/or you are able to ask for help when you need it, you may prefer not to have a representative payee.

Here’s a few things you can do:

  • Nothing – If you don’t have serious mental illness, severe cognitive impairments or drug and alcohol abuse, you don’t need to do anything. Social Security is unlikely to assign you a rep payee.
  • Representative Payee Form – Here’s a form you can ask your doctor to fill out:  SSA-787: Physician’s/Medical Officer’s Statement of Patient’s Capability to Manage Benefits
  • RFC form – If you ask your doctor to fill out a Mental RFC form for you, the question about managing money may be included. Make your wishes known and explain to your doctor why you feel you are capable of managing your own finances. Your doctor probably has no idea that by writing one sentence on this form she may be greatly affecting the rest of your life!
  • Social Security Doctor – If you are sent to a visit with a Social Security doctor, this topic may come up. Think ahead of time about what you wish to say.
  • Hearing – If you have a hearing, the judge may ask you questions about your finances. You can think ahead of time about what you want to stay.
  • After approval – You will probably meet or speak on the phone to review your finances with someone from Social Security. They may ask you rep payee questions.

If you are still applying or recently approved, you can ask your doc for a brief letter on this topic. See below.

Getting a Letter or Form

If your doctor has already filled out an RFC form and written that you can manage your own finances, you may not need anything additional. Just keep a copy of the RFC form to show Social Security when the topic comes up.

If you don’t already have something written about this, and you think rep payee status might be an issue for you, you can talk with your doctor, psychologist or psychiatrist and request a brief letter stating that you are competent and capable of managing your own finances. Or filling out this form for you: SSA-787

In the ideal world, the form or letter would also state if you continue to have severe, disabling symptoms and if your condition has not improved. If Social Security believes your condition has improved, this may trigger a medical review.

  • While applying: You can submit this letter to whoever is handling your case.
  • Right after you are approved: You will be contacted for a financial interview. The letter may say that you will need a representative payee. If it says this, bring the completed form with you, or ask the person doing the interview how you can send it to them.

This letter may or may not be successful, but at least you can try.

“I already have a Representative Payee. I wish I didn’t!”

If you have already been assigned a representative payee, you can:

  1. Appeal the decision within 60 days
  2. Request to be your own payee (anytime)
  3. Request to change rep payees to a different person or agency

Changing Payees: There is no risk in asking to change to a new representative payee. Your request may or may not be granted. They may consider who they feel is the most responsible person to be your payee.

Switching to an Agency: If you wish to change your payee to an agency, this will generally be approved. They can find an agency for you. They agency may charge you a small monthly fee.

Becoming Your Own Payee: Completely removing your representative payee is more complicated.

You can contact Social Security and request an appointment for changing your representative payee status. Bring a completed copy of SSA-787 

Keep in mind: If Social Security feels that your condition may have improved, this can trigger a medical review. Please talk with your doctor and be sure the form accurately reflects your current condition. Or ask your doctor to attach a note or letter stating whether or not your condition has improved and if your symptoms continue to be severe and disabling.

Margaret’s Story

When I applied for disability, I checked the boxes about having memory and concentration problems. However, I also made it clear that I can manage my own money. I wrote this in answers to questions on the forms.

I also specifically told my doctors that I can manage my finances, and for them to be careful how they answer those questions. I have an accountant and a financial advisor who are trustworthy and aware of my cognitive changes. I made sure my doctors knew that, so they would support me.

My son is also disabled, and when he applied I handled this a different way. He needs support to handle his check, so when I filled out these kind of forms for my son, I made sure to write in comments that he could not manage money and needed a representative payee. His doctors also had to answer a question about whether he could manage his money. I also talked about this with his doctor.

I revisit this topic with my son regularly. Once you have a rep payee, it is hard to get rid of that status. It’s better to ask someone you trust to help you with your finances than to get a specific person officially designated as your payee. The key is: do you have someone you can trust?

On a related note, I have recently notified Social Security in writing, to add my son’s Social Worker on my son’s account as an “authorized representative”, and to send copies of all correspondence to her as well as to my son and to me. I did this so that there is another person who can help navigate the (ridiculous) government systems on my son’s behalf. I felt that having another person officially watching would be a good idea. Plus, if something happens to me, Social Security would be aware of an alternate specific person who has been involved. She would be able to advocate for what my son would need for assistance at that point, including what to do about a rep payee.

Learn More

What does a representative payee do?

Why was a representative payee assigned to me?

Representative Payee FAQ

Everything No One Ever Tells You After You Get Approved

Everything No One Ever Tells You About Living on Social Security Disability

Updated April 2019. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons:

35 thoughts on “How to Avoid Getting a Representative Payee”

  1. I just got approved for SSI. Not only did they screw me over in the amount but they decided that I am not competent to handle my own finances. I have never had bills in my own name due to lack of credit but I manage my own bank account and pay debts to whoever purchases things for me on their credit. In addition in my marriage I handled the finances even though they were in my late husband’s name.
    I always check my bank app before I make an expenditure.

    How do I fight this? My entire family is shocked. I have personal issues that would be messed with if I keep this mentally incompetent label.


  2. Hi Sleepygirl, I only found out about this website within the last several days and have to say that it is beyond Fantastic! The huge amount of very detailed yet understandable information about Social Security’s thousands of often incomprehensible disability rules makes this probably the best SSI/SSDI resource on the internet. On that note I have a significant SSI problem that I would like your opinion on if you see this comment. I’m trying to be brief but it is a longer comment.

    I’m a guy in my late 30’s who’s been disabled for more than 20 years due to a chronic untreated illness which I don’t want to reveal here, this illness includes a doctor diagnosis of CFS. I’ve been on SSI for several years now and some of my many symptoms include brain fog, problems reading & concentrating. Despite these cognitive issues which come and go at random I have Always been able to manage my own finances which includes paying all my bills each month on time. However a phone conversation I recently had with an SSA caseworker may jeopardize my financial independence. I submitted an appeal about an overpayment that Social Security is demanding I repay, they want back a few months worth of SSI checks even though it’s their fault that I ended up in this overpay situation. The basics of this situation are that I received a check for a larger sum of money, I knew I would have to report receiving this check to SSA within 10 days once I cashed it. However I decided to hold onto this check for several weeks before cashing it for a specific spending reason which I won’t divulge here, I wanted to use it to purchase an asset that SSI allows you to own. Now once I cashed this check and made my purchase I IMMEDIATELY NOTIFIED SSA in less than 10 days. But I had NO IDEA that they require you to report receipt of any uncashed check within 10 days and that they count all checks as an asset/income immediately upon receipt of it even if uncashed. Which leads me to my first question, have you seen any SSI income/asset rules which Clearly State that failing to notify SSA that you have received a check for a larger sum of money within 10 days is a violation of their rules Even If the check is Uncashed? (I don’t recall seeing any such language in SSA letters or other printed documents) **

    Anyhow I appealed the overpayment, was denied at the 1st level and recently had a conversation about it with an SSA caseworker. This worker wanted to know more info about why I held onto the check for several weeks and couldn’t understand why I didn’t report it immediately after receiving it. This worker said I should have known that I needed to report receipt of any check to SSA even if uncashed within 10 days based upon letters that SSA sent to me. Caseworker expected me to have known that any check you receive while on SSI is viewed immediately upon receipt as income and I guess then as an asset after the 1st month (I had no idea). The C.W. also said I should have known to report an uncashed check based upon past letters sent to me, past office interviews and generally speaking on the reams of SSA income/asset reporting rules that they somehow expect all disabled people receiving SSI to know every detail of. (Which is Insane considering how many thousands of department rules & guidelines they have and how exhausted I get trying to read). With this in mind I told the caseworker that I have problems with concentrating and reading which at times become quite pronounced and make reading extremely hard. This is not all the time but it happens often enough. Once I mentioned these intermittent cognitive issues this caseworker stunned me by stating more than once that I might need a representative payee. I said no I don’t need one and would not agree to having one. However I was not forceful in my rebuttal to this idea and didn’t go into details as to why I don’t need one. After the conversation ended I looked up SSA rep payee rules and was Shocked to learn that SSA caseworkers can assign a representative payee to any competent adult based upon nothing concrete. In SSA rules it says a caseworker can recommend that a beneficiary be slapped with a representative payee based not only on medical and legal evidence but also Lay Evidence (aka the caseworkers personal opinion).

    In rule 1607 SSA says that “Some typical examples of lay evidence are: Our observations (during a face-to-face interview) of the beneficiary’s behavior, reasoning ability, how he or she functions with others and how effectively he or she pursues the claim;” And SSA rule GN 00502.020 Determining Capability – Adult Beneficiaries – A. Policy For Determining Capability says “Unless judged legally incompetent, we presume an adult beneficiary is capable of managing or directing the management of benefits. However, if you have information that the beneficiary has a mental or physical impairment that prevents him or her from managing or directing the management of benefits, develop capability. If you suspect or receive a lead that the beneficiary has a mental or physical condition that prevents him or her from managing or directing someone else to manage benefits, you must make a capability determination.Consider the following when assessing the need for capability development:
    Does the individual have difficulty answering questions, getting the evidence or information necessary to pursue the claim, or understanding explanations and reporting instructions? If yes, do you think this difficulty indicates the beneficiary cannot manage or direct the management of benefits? Do not assume you need capability development solely based on the disability diagnosis (see GN 00502.040, question 4). Develop capability only if there is an indication that the beneficiary cannot manage or direct the management of his or her benefits. All of these rep payee rules & guidelines are Extremely Alarming to me because during my phone conversation with this caseworker about my overpayment appeal I was tired, very stressed out and irate. This conversation went on for more than an hour and the longer I talked the more trouble I had thinking and concentrating. There were multiple instances during my conversation in which the caseworker witnessed me having trouble understanding what he/she was saying to me, general confusion on my behalf and delays in answering questions. This caseworker Specifically Questioned my ability going forward to handle my affairs in a responsible manner which is not detrimental to me. I’m guessing this had to do with the fact that I mentioned that there are times when I have trouble reading letters sent to me by SSA. I wish I had told the caseworker specifically that I’m able to do basic math and that I am now and have always been fully capable of handling a budget, paying my own bills on time and spending my money in a responsible manner. I did tell this caseworker that my cognitive issues come and go at random but I wish like hell that I had not brought any of this information up in the first place period. With all this in mind I have 2 additional questions – do you think it’s highly likely based upon all I have outlined that this caseworker will overreact and order my finances to be managed by a rep payee? And if they do will the department continue issuing my SSI check directly to my current checking acct while I appeal their stupid decision? (I did see this SSA footnote which seems to suggest this) CAUTION: Do not delay or suspend benefits while developing capability, unless noted in the exceptions to immediate payment, per GN 00504.105 Direct payment to Incapable Beneficiaries When Further Payee Development is Needed.)

    Apologies for the length of this comment but I will not get a final letter about my waiver request (or any future orders like this rep payee crap) for at least a couple of weeks or more and right now I’m COMPLETELY FREAKING OUT over the possible ramifications of the disastrous conversation that I had with this SSA employee. If you could address this and my question about uncashed check rules I would greatly appreciate it.


    1. Thank you for your lovely comments.

      I have never heard from anyone who was given a representative payee years after approval. I would not stress about this at the moment if I were you. I think the caseworker would likely need a stronger reason than just a phone call to take action.

      Worst case scenerio, they would send you a letter to have a meeting or phone call about rep payee, if that were to happen, you can use the link on the page above and ask your doctor to fill out the form stating you can manage your finances. Caseworker won’t overrule your doctor.

      I’m sorry I don’t know the answer about cashed checks. I think you are doing the right thing by appealing and/or requesting waiver. You can try both methods. More info is here:


  3. I’m 62 years-old, and have been physically disabled for over eight years now, with also CFS, which caused some minor occasional confusion. At that time, benefits where distributed by check, and most transactions like rent, electric, etc., where also paid by check. My brother who is a financial adviser, was assigned as my Representative Payee, even though my confusion is not sever. My brother is fighting Cancer now, and there is a probability that he will succumb.
    I have heard some horror stories about Representative Payee abuse that I do not want to be victim of. This article has been helpful to me in understanding my options; and seeing how all of my financial transactions, like electric, rent, etc., are now all done electronically, or by credit card; my brother really hasn’t had to do anything for me, apart from filling out the Yearly Representative Payee Report.
    If there are any other people who face a similar situation, and you have any specific information, how to cancel Representative Payee, because everything is now electronic; that would be very helpful.
    Thank You for your time and effort in this matter. – Mike


    1. what happens if your payee’s second year of doing it and she screwed up and filled out the tax form wrong and made me being dependent on someone’s taxes but never claimed me on anybody’s taxes just screwed me out of my stimulus check….. What can I do to get my stimulus check now…


  4. I went through 16 years of Representative Payee Abuse in basically the worst way possible. Basically, I ended up being forced to rely on credit cards simply because my needs were not being met.

    February 23, 2018 was my opportunity to escape and I took the opportunity after the month prior I knew their fate was sealed after one person blew the whistle and it wasn’t until I moved from Marion to Fort Wayne I realized that Representative Payee Abuse is effectively the same as domestic violence in layman’s terms.

    After I terminated the Representative Payee Agreement in June 2018, I knew that I had left pretty much what was like an abusive relationship and now picking up the pieces, healing aside from the fact I got off to a bad start after I moved.

    A year and a half has passed since kicking the rep payee to the curb. I’m always going to be recovering from Representative Payee Abuse and knowing what my best interests are and knowing what I know now is what a relationship, much less a Representative payee isn’t.

    I’ve watched enough movies about domestic violence to know what I’m talking about and I went through 16 years of hell.


  5. I think it’s dumb you have to have a resident whatever you call it payee I’m disabled and Mild retardation I’m incapable of handling my money but I’ve learned in so many ways how to how to do it and I have my husband who helps me out I love you little by little but still they think I’m stupid that I don’t know how to do things cuz I know for sure I paid my bills first my phone bill my rent and Bill light and everything those always came first I have a daughter who have to support in Mexico and I’m afraid that I’m not going to be able to send her money and she still in my care I don’t know what to do I draw and they want me to have one that’s through agency and I tell him I don’t trust people have trust issues because people messed me over and they did they can I have who I want someone who all trust not having them telling you who I can and who I can’t have if I have trust issues shouldn’t they give me some one that I want that I trust


  6. I have a question. I’m in the process of applying for SSDI (at the reconsideration level) for major depression, severe anxiety, and PTSD. I met with my psychiatrist to fill out some paperwork and he answered “no” to “do you think the patient is able to manage benefits”. He attributed it to poor concentration, insight, and impulsive behavior. Does this doom me automatically? Some background — I have a master’s degree and actually worked in the mental health field at an agency serving as an organizational payee. I have a bank account. I filed bankruptcy in 2009 because my ex husband cleaned me out and ran up our credit cards. I don’t want to have to beg my husband for every dime but my credit score its good now (709). Please advise. Thanks.


    1. Ugh, my Kindle froze on me. It should say “i filed bankruptcy in 2009 but my credit score is good now. I don’t want to have to beg my husband for every dime”.


    2. Hi Joanna,

      Excellent question. I can’t say for certain what will happen with your case, but it is likely you will be assigned to have a representative payee.

      If you wish, you could ask for your psychiatrist to write a letter to update/clarify this point and explain why you don’t need one, and submit this to SSA before decision is made, and then also bring it to your interview after getting approved.

      Your payee does not have to be your husband, you could chose a person you want, or you could chose an agency like the one you worked for. Hope this helps


  7. My boyfriend is deaf and he is on SSI and his mother is his payee. My boyfriend is confused as to why his mom is his payee even when he pays all his bills on his own and he is 25. He makes like $700 (as he thinks he knows) and his mom take $500 for rent at her house and then the other $200 is for his other bills (car,etc). The last time she showed him his award letter was in 2013 & it is now 2018. She keeps his social security hidden from him, his insurance, and tries to control his every move with his money. She literally has him so teriffied to go to ssi and try and change payees or even try to change his status to adult because she tells him he will lose his SSI if he does. He will not ever get his hearing back and i explained That to him, that is not true. Now that me and him are thinking of trying to have a family together, he is considering to change his payee status OR me to his payee. I think she misinformed people that he is mentally slow or something because she don’t understand his sign in ASL and when he talks English and ASl it is 100% different almost. The way he was taught in school was ASL and when you write down in asl language it’s like half sentences. He knows perfectly everything for the most part when he signs. he definitely has been smothered his for years by his mom doing everything and giving him no choice to stick with it. When he met me he seemed so scared of his mom because if he didn’t do what she says… it’s like he was scared she wasn’t gonna give him money to do this or that. I don’t know much about ssi and someone deaf ?? So I guess that’s why I’m here… will he have to worry about them taking ssi away because he wants to be on his own or even with another payee?


    1. Thanks for sharing your story.

      As far as I know, there is no risk in trying to change his payee to someone else. He will not lose benefits for that.

      However, it may be helpful to know that getting married can affect his SSI or make him ineligible for adult disabled child benefits. Also, in some situations, living with a girlfriend can affect SSI, but not always.

      More info is on this page, hope this helps:


    2. I’m so glad you wrote. I don’t know any more about the situation other than what you wrote. If I’m missing other specifics I could be wrong, and from what you wrote, this sounds like a very controlling situation and he needs specific supports to navigate her behavior that doesn’t sound all.

      A payee is for someone who is medically incapable of managing their money. From what you wrote, an adult person who is only deaf completely doesn’t fall into that category and therefore his mom is being manipulative. It sounds completely excessive the amount she’s charging for housing and expenses. It would be good for him to have a disability advocate who is familiar with this type of abuse to help him navigate this challenging situation
      He has a lot of rights in this situation under the Americans with Disabilities Act.
      It’s figuring out out how to navigate his rights with finesse with the least amount of harm to him by his mom that’s important. When It’s a parent/adult child, it’s particularly can be a very challenging situation by the nature of the relationship and it would be good if has both you and others for suppport to navigate this.
      There are many agencies that may help him with support. First, does his mom monitor his email? If she does, then if he can use your email to get support, then that would be best.
      Does he has phone service for the deaf? I think that’s available to him for free- where the phone translates the spoken word into words on a screen.
      He may need to strategically hide what he’s doing from his mom if she’s going to manipulate whatever she hears him say to advocate for himself.
      You are a wonderful advocate to post here to find him support. And he may need an advocate also who knows the system of disability to help him:1) understand his rights 2) find resources that he is eligible 3) navigate the situation with his mom. There are many many resources in the community to help with this.

      Going directly to social security is an option, as they can change the payee. It can feel intimidating to some,

      There are also non-profit agencies that can walk him through the process, and let him know his rights prior to contacting social security so he can feel knowledgeable about what he’s doing.

      Almost all towns and cities have a Center for Independent Living for people with disabilities. He may not want to mention this to his mom, as the mention of Independent Living could feel threatening to her. He could say he’s going to a movie with you, or something like that.

      You can call 211 if you’re in the US and ask for disability organizations. He may want to start out with one of these advocacy groups first prior to going to social security
      But if he understands that he can go ahead and change his payee to himself, then he can go straight to social security. I think the form is online to do this. I think they then need to interview him or something like that to make sure he is mentally competent to manage his money. By this, I don’t mean like the average person who doesn’t know how to manage money, but medically incapable. If he’s unfamiliar with how to manage money, that isn’t what they’re looking for.
      Independent Living may be a great resource for him to know what he qualifies for as a person who’s deaf for technical assistance and other resources in the community. He doesn’t have to live separate from his mom to go to Independent Living center. I highly suggest he just contact Independent Living to see if they can be of support.

      To find agencies if you are in the United States
      -Google Disabled Center for Independent Living and your state
      -contact The National Association for the Deaf and tell them the situation to get support
      If he does legal difficulty with his mom, there are free legal services that you can ask about
      -Google “disability rights” and your state for a state agency that can inform him of his rights

      The best of the best!


        1. We’re in this together! I called a couple agencies prior to writing this. It may be helpful to know that I was told it is far too common that parents, siblings, and caretakers take advantage of people who have disabilities. Your blog sleepygirl is helpful so many who otherwise wouldn’t have this information. Your blog is a true gift!


      1. I am sorry, this is actually a new post, but I couldn’t figure out how to do it!

        I have been on SSDI since 2016, I receive auxiliary benefits for my 2 daughters. My daughter decided to move in with her father recently, we have joint legal custody. I just received a letter stating that “they have decided it would be best for my daughter to have her checks sent to another payee.” My ex called SSDI, told them my daughter was living with him, and now HE is receiving auxiliary benefits she receives due to MY disability! I need that money to support her! I still need a home, utilities, food, clothing etc.! How can they do that without speaking to me first? He is also suing me for child support on top of it! I need help!


        1. Hi Torin,

          I am not sure how they make the determination with joint custody cases.

          You have a right to appeal the decision. You can visit your local office and request to appeal the representative payee determination.

          They may decide to choose the parent where she spends the most overnights. If her schooling is registered at your address, you can bring that or anything else you have as proof, but if she is majority living with dad, they may make him the payee.

          I hope your local legal aide program might be able to assist or support you around the child support issue. Sometimes the decision about who is representative payee gets made as part of the divorce and custody agreement. Sometimes auxilliary payments are considered to be child support.

          I hope it goes well for your family.


  8. I was approved in March. On the judges decision letter it stated my back pay amount in one paragraph and how much they would hold for attorneys fees, then in another paragraph it stated that I MAY need a representative payee and that my back pay amount could not be determined until Social Security received more information (I am paraphrasing). I called the national SS line and asked about this. The guy I talked to was very rude, would not even look at my file, just told me that “He sees this letter a thousand times a day and it doesn’t mean I need to do anything. If I needed one I would know because they would send me a letter saying so.” I asked him to please look at my file and see what it says, he continued to talk about the letter always saying that and to wait for another letter.
    TRIGGER ALERT*** He then went on to explain, after I had told him I got disability largely because of anxiety and depression, that representative payees are needed because someone with a mental issue might spend all their money as soon as they get it and then be depressed and commit suicide. YES, he actually said that. I did call the next day and make a complaint for a supervisor to listen to the call, although I never received a call back as promised.
    Well, come June, I called to see what was going on with my back pay.I was told that my attorney had just been paid and it is usually 2 weeks after that back pay is released.
    On July 9th, I called to check and was told that my back pay was being held in the payment processing center because of a workman’s comp payout I received and that they were recalculating my back pay. OK, the judges orders and award letter stated that my workman’s comp would not affect my payments.
    I called on July 20th to inquire about the status and was told that my back pay was being held pending an in-person interview to determine if I need a representative payee. I laughed, very heartily. I explained that I called in March and was assured I did not need one or would be notified and I have received no notification. I was also told the my attorney would not be paid until I completed the interview.
    Not truly trusting anything I am told by them anymore, I called again today to verify before going to the local office. Today it was confirmed that I need to do the in-person interview before any funds can be released. Mind you, I have been receiving monthly payments since May. I asked about a letter being send and was told that a letter would have to have been sent. Then after a short pause, was told that no letter had been generated and the was no notification in the system. I asked how I was supposed to know I needed to go if I was not notified and the agent apologized and said this should not happen.
    SOOOOO, tomorrow, I am going to the local office to do this in-person interview that I could have been pro-active and done in March if they knew what they were doing.
    Anyone else have experiences like this, or just my luck?


    1. Sounds like a bunch of screw ups on their part. It is good you are getting your monthly check.

      If backpay doesn’t get released, contacting your congressperson’s office can help a lot. The worker’s comp offset may be holding things up – I have seen that happen.

      For representative payee, if you wish, you could bring a letter from your doctor stating that you are capable of managing your own finances, if this is true.

      I hope it goes great for you.


  9. My name is Henry 😊 and I’ll be turning 31 this September. I just realized I can legally become my own Payee 😮. I’ve been trying since I was 18, since I won my case via court. My grandma was assign as my Payee. Me & my grandmother are cool 😎, however she’s trying to dictate my life 😟. Everytime I try to move and get my own place she tries to scare me trying to convince me to stay near her 😠. She’s strong as an ox and smart. However she’s not understanding the big picture here 😒. I want to relocate, get a place and life of my own so I can start dating and look for a wife 💍 and settle down with children of our own 👨‍👩‍👧‍👦😍… As you expected it she uses a scary tactic or excuse to prevent me from living my own life here and it’s become agonizing to me 😒. I just need to simply remove her as my Payee so I can live my own life. Hey I’ll always be around to check in on her from time to time, however she needs to let me go 😇.


    1. I hope it goes great for you Henry. Another option is to find someone else you trust to ask to be your payee, or to have an agency be your payee. Please come back and let us know how things work out with this.


  10. My husband and I are currently separated but are still working on our relationship, can I be assigned his payee?


  11. Can someone tell me how you are notified if you need a representative payee? My husband received his award letter. His disability lawyer called and said we needed a representative payee and to get that set up or it would hold things up. I called the disability office and they said that was not true and he pulled the award letter up himself to verify. While it is talking about lawyer fees, the letter says “when processing your claim we found we needed more information. To decide how much your benefits will be, we need more information about your representative payee. When we get that information, we will decide the amount of your past-due benefits and send another letter telling you how much the representative can charge.” I’m not sure what this means and I’ve gotten two different opinions on it. My general feeling is that social security is needing more information about the lawyer charges to determine how much to take out of his backpay. But, it does use the words ‘representative payee’, which makes me wonder! I’m assuming that because the disability office told me my husband did not need one, we’re good to go?


    1. I can’t say for sure, but if the letter says representative payee, it might be a good idea to set up an appointment at your local office.

      If you have children, you can use this same appointment to sign up your kids to get dependent benefits.


  12. I have a similar but different issue.
    My mom will leave me money when she passes. I’m 53, she’s 80. I’m on SSDI , SSI, medicaid, food stamps, subsidized Usda loan and section 8.
    My mom will probably leave abt 250k. She’s worked it out with a lawyer to leave me her house (I wouldn’t more there but sell). I have two cousins in line to be my trustees. They are 7 and 10 years older, so I’m concerned if they get ill or pass away prior to me, I don’t want that money going to a rep I don’t know.
    My nieces are younger but unsure about them as a lot to ask when they only 18 and 20.

    I’m wondering if one of my mom can write she’d like everything to go into an ABLE account, but since they are new and all the regs haven’t been figured out, and with changing laws happening , I’m wonderong if that’s a good idea.
    Any suggestions ?


    1. Sharon,

      A representative payee is a totally different thing than a trustee of a special needs trust. You can have one or you can have both. They can be different people, or the same people. I wasn’t sure from your question what you have 🙂

      Did your mom set up a special needs trust for you? And the house is going into the trust?

      An ABLE account has a limit of how much you can put in per year. I think it is 14k per year, plus the whole account can’t go over 100k.

      Your mom can start giving you money into your able account now, but it is not a good match for a large inheritance.

      I believe that money from a special needs trust can also be transferred to an able account. So after your mom passes away, your trustees may be able to continue to put in the 14k each year.


  13. Lily, from your link:

    “Beginning December 2014, FFS organizations may collect a fee of up to 10 percent of the total monthly benefits from beneficiaries, up to a maximum of $41 per month. FFS organizations may collect a fee up to 10 percent of the total monthly benefits , up to a maximum of $78 per month, from beneficiaries entitled to disability benefits that have a drug addiction and/or alcoholism condition. SSA must authorize the higher $78 fee.”


  14. Lily, if a SS recipient has someone assigned as a payee to manage his or her money, how does that person or organization get paid?
    Does the fee come out of the person’s income?
    If so, how much is it?
    Or does SS pay that person or organization separately?


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