How To Navigate Disabled Adult Child Benefits (Social Security from Your Parent’s Income Record)

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Art: Robin Mead

If you first became disabled before the age of 22, you may be eligible for Disabled Adult Child Benefits. Even if you are older than 22 now, you may still qualify.

Disabled Adult Child Benefits are a different amount of money for each person.

For some people, they can mean a much higher disability check, better health insurance, and less stressful financial rules to follow.

For other people, these benefits will make little or no difference in their circumstances.

Who Qualifies

You may be eligible for Disabled Adult Child benefits if:

🌷You first became disabled before the age of 22.

🌷 Social Security agrees that you first became disabled before the age of 22.

🌷 One of your parents has died, retired, or become disabled (if this hasn’t happened yet, you can still get Adult Child benefits at some point in the future).

🌷 That parent was or is eligible for Social Security Benefits.

🌷 Note: If your parent’s Social Security check was very low, in some cases, you might not qualify. If your parent was on SSI (not SSDI), you might not qualify.

When did I become disabled?

When you think you became disabled may not be the same as when Social Security thinks you became disabled.

To qualify for Adult Child Benefits, you will need Social Security to decide that you have a disability “onset date” before you became 22.

Your onset date should be included in the award letter you get when you are approved for disability. It will tell you when Social Security decided you became medically disabled. If you don’t have the letter and don’t know what your onset date is, you can call and see if someone can see it in the computer for you.

When Do My Benefits Start?

Disabled Adult Child Benefits don’t always start right away. They start when one of your parents dies, retires or becomes disabled.

In the meantime, you can collect SSI or SSDI, and then eventually switch to Adult Child Benefits when the time comes.

Example: Julie applies when she is 23. She is approved and given an onset date of 21. She begins collecting SSI. Later in life, when she is 32, her father retires. Because her original onset date was age 21, she is now eligible.

How Much Will My Check Be?

There a complicated formula, so we can’t answer this question. A common amount would be:

Parent is still alive: 50% of whatever amount parent’s check is. For example: Mom collects $2,000. You collect $1,000. Your SSI check would go away.

Parent is passed away: 75% of whatever amount parent’s check would be. For example: Mom would have gotten $2,000. You collect $1,500. Your SSI check would go away.

If there is another spouse or sibling also collecting off mom’s record, the amount may be lower while mom is alive, but may be full amount when mom passes away.

Can I Get Off Both Parents?

No, it will be one or the other. Or start with one then switch.

Will My Parent’s Check Go Down?

No. This will have no impact on your parent.

Once I’m On Adult Child Benefits, Do I Follow the Rules for SSI or SSDI?

Good question! Complicated question! To stay on Adult Child benefits you follow the rules for SSDI, and you are free from all the pesky SSI rules.

However… if you want to keep Medicaid… in some cases you have to keep following the SSI rules. It depends what form of Medicaid you are on. More details below.

Adult Child benefits also has special rules for marriage that are different than both SSI and SSDI. See more below.

How to Apply – If you are ALREADY on Disability

When one of your parents dies, retires or becomes disabled, contact Social Security and tell them you want to schedule an appointment to apply for Adult Disabled Child Benefits. They may be able to do it in a phone appointment.

The process is slightly different depending on your situation:

If you were under age 22 when you first got approved for disability

You’re good! You don’t need to do anything but call or visit local office and put in the application.  They may look at your current medical records, so it is important your recent records are accurate. If your records state that your condition has improved this may cause an issue.

Update: Some readers are reporting that Social Security has recently changed the rules and is making it harder for the Social Security employees to process these cases. Some employees are dealing with this by telling you to collect medical records and proof from before age 22. You do not have to do this. It is NOT your job to get medical records from the past. If they give you any problems, send them these rules for Collateral Estoppel, They are required to approve you, and if they have lost the old medical records, that is their problem and not your responsibility.

There is an exception, if you worked while you were age 22+ and you ever earned over SGA, then you might not be eligible for Collateral Estoppel. You might need to take more steps to prove that you were continuously disabled since before age 22.

If your onset date is listed as before age 22

You’re good! You don’t need to do anything but call or visit local office and put in the application.  They may look at your current medical records, so it is important your recent records are accurate. If your records state that your condition has improved this may cause an issue.

Update: Some readers are reporting that Social Security has recently changed the rules and is making it harder for the Social Security employees to process these cases. Some employees are dealing with this by telling you to collect medical records and proof from before age 22. You do not have to do this. It is NOT your job to get medical records from the past. If they give you any problems, send them these rules for Collateral Estoppel, They are required to approve you, and if they have lost the old medical records, that is their problem and not your responsibility.

There is an exception, if you worked while you were age 22+ and you ever earned over SGA, then you might not be eligible for Collateral Estoppel. You might need to take more steps to prove that you were continuously disabled since before age 22.

If your onset date is listed as after age 22

This may be more difficult. You can choose to appeal this onset date and go back in time to show it should have been earlier: How to Go Back in Time. However, there are a few hitches. One: We do not know if there is a deadline for this. We have not been able to find any rules addressing this (if you find any, please comment below and let us know). Two: appealing an onset date can reopen the original decision so it can be risky. Three: If a lot of time has passed, it may be difficult to get medical evidence that far back.

How to Apply – If You APPLYING for Disability 

If you are under 22 right now

This part should be easy, just go apply disability. You do not have to do anything special. Just put in a regular application for SSI or SSDI, and make sure to answer the questions asking if one of your parents is deceased, disabled or retired. Do everything you can to get GREAT medical evidence dated before you turn 22.

If you are over 22 right now

It is a bit more complicated. You can still put in a regular application for SSI or SSDI, but if you want to get Adult Child Benefits, you would also need to prove that you first became disabled before the age of 22. Here’s how you do that: How to Go Back in Time. It is often worth making an extra effort to do this now, as it may make a big difference in your future.

Switch! 

You can start out on one parent’s work record and then switch to another one (if the second parent later retires or passes away).

Or you can start out with dependent’s benefits and then switch to survivor’s benefits when one parent dies (survivors benefits are usually higher).

Social Security should give you whatever benefit is the highest, but they don’t always do it, so it’s good to keep track of and contact Social Security to make the request when the time comes.

Special Secret Loophole for Keeping Medicaid

Many people who became disabled at a young age, start out on SSI (which comes with Medicaid). Then, sometime later in life, they switch to Adult Disabled Child Benefits (which comes with Medicare).

But wait! Medicare can be expensive. What will happen to your Medicaid?

Luckily, there is a special secret rule that says you cannot lose your Medicaid by making this switch. Even if you have too much income for Medicaid now, you still get to keep it! And you get to keep the Medicare too! Good deal.

The combination of Medicaid and Medicare is really excellent health insurance, as they cover different thing. Medicaid will also pay all your Medicare co-pays and premiums.

Warning: Sometimes people at Medicaid make mistakes, and sometimes they don’t know all the special secret rules. If you run into any problems, show them this policy on Medicaid continuations.

Warning: Watch your assets. If you stay on Medicaid this way, you need to stay under the asset limit. In many states the asset limit for a disabled person is $2,000. They do not count one car, one house, and ordinary household items. One thing that can help with staying under the asset limit is to open an ABLE Account.

Warning: Watch your other income and savings. Income from Disabled Adult Child benefits won’t affect your Medicaid, but other kinds of income still will. Be careful. To stay on continued Medicaid, you will need to still keep the same income limits as if you were still on SSI. You do not need to keep following every SSI policy (like the rules for rent), but you need to continue to meet the basic criteria that would allow you to be eligible for at least $1 in SSI.

If you go over the income and asset limit and get cut off Medicaid, then later your finances change, can you get it back? We don’t know. The policy above doesn’t specify what happens in this situation, but the policy does that that this only applies to people who got cut off because of Adult Child Benefits, not people who got cut off in other ways. If you know more about this rule, please comment below.

Update: We have heard from multiple readers who were cut off medicaid in this situation, and had to advocate to get the problem fixed. Medicaid workers may not know these rules. You may need to talk to supervisors or file complaints if they do not honor the policy.

Other options: You can also look into other forms of Medicaid that are less restrictive, such as Medicaid for working disabled, or Medicaid waivers. As a disabled person, you cannot qualify for Medicaid through the Healthcare Marketplace, so don’t look at any of the income charts for the kind of Medicaid most people use.

How Much Will Your Check Be?

The amount of your Disabled Adult Child Benefits will depend on which parent, if they are passed away or disabled or retired, if anyone else is drawing off the earning record for this parent, and the amount of the parent’s earning record. You can collect off either your mother or father, not both.

If someone else is drawing off that parents income record, this may cause your adult child benefits to go down. For example, if you are collecting from your mom’s record, and your dad is also collecting spousal retirement benefits from your mom’s record, both benefits will be reduced. This is called Maximum Family Benefit. However, in this situation, if parents are divorced the Maximum Family Benefit might not apply.

Disabled Adult Child benefits will cause your SSI to reduce. If you are receiving another form of Social Security, it may be replaced by Disabled Adult Child benefits. Your monthly disability check will never lower because of the new benefits. Your total check will either stay the same or raise up.

If you are also receiving veterans benefits, or if one of your parents was a veteran and you receive veterans dependent benefits, this will be added to your Social Security check. You will get both, so your check will definitely go up.

Low Check

If your Adult Child Benefits are lower then maximum SSI, you will get a combination of SSI and Adult Child Benefits. This is not super exciting, but it is still nice because you get an extra $20 per month, plus better health insurance.

High Check

If your Adult Child Benefits are higher than maximum SSI, you won’t get any SSI anymore. You’ll just get the Adult Child Benefits. This is super exciting, because you will get better health insurance, a higher disability check (sometimes much higher), and something else really great…

You will no longer have to follow any of the SSI financial rules. You’re free! It no longer matters how much rent you pay or how much income you have or how much money is in your bank account.

From now on, you can just follow the rules for SSDI. (Hint: There are almost no financial rules for SSDI!) You will still have disability reviews, and you must follow the work rules if you work.

Do I Need to Keep Following the SSI Financial Rules?

Maybe. If your disabled adult child benefits are high enough, your SSI will stop. You won’t need to follow all the rules anymore for SSI.

But there’s a problem. Medicaid. If you are getting continued Medicaid, you need to stay eligible for SSI in every other way (they ignore the Disabled Adult Child benefit check being too high).

It depends what form of Medicaid you are on. If you are on a Medicaid waiver or Medicaid for working disabled, this may not matter.

Working and Disability

Here’s a few Special Notes for Disabled Adult Children Who are Working

Switching Benefits

If you are already receiving Adult Disabled Child benefits, there are a few ways your check might go up:

Second parent – If you are receiving from one parent’s record, and then your other parent retires, dies, or becomes disabled, you can switch. Social Security may do this for you automatically, but it may help to double check. You can contact Social Security to ask which parent has a higher income record and make sure you are collecting off that parent’s record.

Survivor’s benefits – If one of your parent’s dies your check might go up. Survivors benefits are often a higher amount then benefits from a parent who is retired or disabled.  Social Security may do this for you automatically, but it may help to double check.

Other dependents – If anyone else is drawing off your parent’s income record, this can make your check go down. For example: Julie and her mom both collect off of dad’s earning record. The benefits of $1,000 are split. Julie collects Adult Child Benefits of $500 and her mom collects spousal benefits of $500. These rules are called “Maximum family benefit”

Bonus: If Your Parent Was a Veteran

You may be able to collect benefits from both Social Security and the Veterans Administration. Here’s where you can find basic information, but readers report that it’s often better to reach out to local counties or volunteer organizations for assistance: Veteran’s Dependent Benefits. 

Warning: Marriage

If you are married, or get married, you will lose your Adult Disabled Child benefits. You may also lose Medicare and Medicaid. You can still apply for SSI (or stay on SSI if you are already on it), but if you are married to someone with income, your SSI may be very low, or you may not qualify.

Exception

One exception to this rule is if marry someone else who is on Social Security. You will not lose Disabled Adult Child benefits. A few important points:

You must already be receiving the Disabled Adult Child benefits. when the marriage occurs. 

Your spouse must be on Social Security. Warning: SSI does not count as Social Security. It must be SSDI, or DAC, or another form of Social Security. How to Tell What You’re On

Warning: Even if your benefits continue, marriage could impact your Medicaid eligibility in some cases.

Policy: https://secure.ssa.gov/poms.nsf/lnx/0410115050

Warning: Living Together

Many of our readers wonder if living together without getting married will cause a problem for their benefits. The answer is: we don’t know. The rules in this area are complex and unclear. We have never heard from a reader on Disabled Adult Child benefits that has had a problem in this area, however there are a few policies it might benefit you to be aware of.

The first rule is “common law marriage”.  Social Security has a policy that if your state recognizes common law marriage, you may be considered married in the eyes of Social Security – even if you are not legally married. Here is where you can find this policy: Social Security common law marriage policy.

The second rule is called “holding out as married”. This rule is quite tricky, because if you read the policy, you will see that it very clearly states this rule only applies to SSI. We have not found any policies that indicate this should be applied to Disabled Adult Children benefits. Nonetheless, we have heard reports that some Social Security workers are applying this rule to disabled adult children benefits. Probably the best thing you can do is take a look yourself at the Social Security holding out as married policy.

Divorce or Widow

If you are married and then become divorced or widowed, you cannot get your original benefits back. But wait there are some loopholes!

LOOPHOLE # 1

If your marriage is annulled or voided (not divorce or widow) benefits may return.

Policy: “A child whose entitlement to child’s benefits ended… may be re-entitled on the same earnings record upon filing a new application without re-establishing dependency if he or she: has not married since he or she last became entitled to benefits, unless the marriage was void or annulled.” – Policy on Re-entitlement for Child Benefits

LOOPHOLE # 2 

If you were collecting off of one parent’s record before marriage, then you get divorced, you may be able to collect off your other parent’s record after marriage.

Policy: A marriage that ended by death or divorce precludes re-entitlement on the same parent’s earnings record. However, a child whose marriage precludes re-entitlement on the same parent’s earnings record may establish initial entitlement on their other parent’s earnings” – Policy on Re-entitlement for Child Benefits

LOOPHOLE # 3

If you never applied for Disabled Adult Child benefits before, and you are not married in this moment you may be able to apply even if you were married and divorced in the past.

Policy: “Definition of unmarried: A child who has been married is considered unmarried at the time of filing an application for initial entitlement to child’s benefits if: at that time, the marriage has been terminated by annulment, divorce, or death.” – Policy on Marriage Definitions For Initial Entitlement

Other Options

You can still apply for SSI. However, this option is less ideal: SSI is often a lower monthly check, you will not get Medicare, and a new SSI application may take several years to get approved.

If the person you are married is also on SSDI or Disabled Adult Child benefits, your benefits will not end. (SSDI only, not SSI)

Important

Don’t expect that anyone you talk to at Social Security will know all these rules and loopholes. Print and show it to them. Write down the exact language from policy on your application when you apply.  If you need to, keep appealing.

Smart Tip from a Reader

“I found out a Social Security loophole:

“When someone starts receiving Disabled Adult Child benefits, it is possible for their parent to start receiving Social Security early or have their benefits increase. It is called a Child-In-Care Spousal Benefit. That parent must be:

  • a parent of the DAC recipient
  • the spouse (or ex-spouse) of the person whose work record the DAC is receiving benefits off of and
  • providing parental responsibilities and/or personal services to the DAC recipient. (Note: This usually includes living together, but not always.)

“Under these circumstances, that parent is eligible to receive up to 50% of the other parent’s full social security benefit amount. This amount can increase to 75% if their spouse (or ex-spouse) dies.

“Caution: A parent receiving this benefit can be subject to an earnings limit. So be careful about claiming this benefit if the parent is working or already being paid as a home aid.

“Also: all the social security benefit recipients would be subject to the Family Maximum Benefit rule, which might cause a decrease in the DAC’s benefit amount if the spousal benefit is also being collected.

“Hope this information helps someone get some extra money.”

Policies

Excellent detailed overview of Disabled Adult Child Benefits policies.

Official Social Security policy manual. Disabled Adult Child benefits are called “Childhood Disability Benefits?” https://secure.ssa.gov/poms.nsf/lnx/0411020000

What Do You Think?

🌷 This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability Art on this page by Robin Mead and Elizabeth D’Angelo. Page Updated: 7/1/19

🌷 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:

214 thoughts on “How To Navigate Disabled Adult Child Benefits (Social Security from Your Parent’s Income Record)”

  1. My son was on SSI, now DAC recipient. We claim him as a dependent on taxes and was wondering if his DAC income needs to be added onto our family income for ACA Obamacare subsidy? Is DAC considered as SSDI in this case?

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    1. DAC is a form of SSDI. I would assume that it gets added the same way. I don’t know the rules for healthcare marketplace, but it seems likely to me that someone who is a dependent we need to be included in their household application including all of their income.

      Like

  2. I have a mental disorder that began at 19 after a traumatic incident.
    I didn’t get treatment and diagnosed until 26.
    I was approved for SSI disability at 28.
    I have no medical records of my condition before 22, but during treatment at 26, I did document with my doctors what happened at 19 that caused the onset.

    I’m now 39 and my dad just retired and started collecting his benefits.

    Do you think I have any chance of getting DAC benefits on my dad’s earning record?

    If yes, what do I need to do next?

    Would I have to apply all over again and go through a redetermination?

    I had a full review a few years ago and prefer not to go through that again if odds are against getting approved. I also don’t want to do anything that could put my SSI in jeopardy and end up with nothing.

    Like

    1. They typically need some type of documentation dated before the age of 22. If there’s anything that you can find that in anyway references your mental health… Reports from school psychologist… Police reports… Any hospital records or inpatient treatments… Or any social service programs you were part of that have records… You could review those with your doctor and ask your doctor to write a letter stating their medical opinion about when you became disabled based on those documents.

      Without any kind of documentation I think it might be difficult to get approved. They do complete a medical review when you apply, though we have not heard from anyone who has been cut off during this process.

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    2. You will need a lawyer and a fair hearing. It’ll be hard, my lawyer said it would be a hail mary but I did get it. All of my records before 22 were destroyed by the time I applied. I did have some testing that shows I have ADD and autism and those disorders are life long. If your doctor supports when your condition started it’ll help

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  3. I am trying to file as an adult child. My disorder began at age 17 or 18, and i can get all my medical records. the problem is that in 2000 and 2001 i went over the SGA amount. I read that there can be some exceptions for the SGA amount. I am friends with a former supervisor at my old work place that can testify that i had special accommodations, took frequent breaks, had meltdowns, and worked irregular hours. is there any chance i can be approved?

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    1. Do your medical records from 20 years ago still exist?

      If yes, you can certainly try for this. I put the link to a form on your other comment. I would expect this to get turned down the first two times, keep appealing til you get to a judge. If you get a nice judge, and you can really show documentation that your work place arrangement would qualify as being special subsidies, it’s possible. Hope it goes great.

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  4. I receive DAC benefits and live in the state of Washington. It my most recent medicaid review back in March 2020 I was told that there is no longer an income disregard for DAC and I therefore no longer qualify for medicaid. I looked up state and federal laws about this and I don’t see anything that has changed. There is a note that about a preliminary proposal to change and then a request by the Healthcare Authority to withdraw the preliminary proposal but I am not sure what that means. Are other states not allowing the income disregard anymore? I cannot find answers from anyone. They just keep referring me around in circles. I am trying to find out because this would be quite a big burden on me financially.

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      1. During covid they are no longer requiring the $2k income limit in the state of NC. MY SON IS MEDICARE/Medicaid under a 1915c waiver. When Supplement K is lifted they will go back to income limits. Check your state. March may not have implemented yet.

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    1. were you receiving SSI before DAC? Not sure if it’s recent but here if you weren’t receiving SSI before DAC then they count the DAC income.

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  5. My daughter became permanently disabled prior to age 22 and is now age 44 and has been receiving SSI for many years. She also has Medicare/Medicaid with Extra Help. I retired in 2018 and my husband has been retired for many years with a disability. My daughter is receiving monthly disability on my husband’s record from the Railroad Retirement Board. Would my daughter be eligible to receive an additional benefit under my SS record?

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    1. If she’s on Medicare, she’s already getting some form of social security besides SSI? She might already be getting benefits off your income record. If not, it is certainly worth applying for.

      Like

  6. I do not remember when I filed with help from a friend and family but my current caregiver has told me for sure it was all least June 1st making it four months already. My provider and family have been helping me keep on top of it by calling the 800 number and even DDS in my state.

    The person told me “your claim examiner has been out so I looked at the case today and it looks like we will be able to release it um I just need the doctors to review it real quick but it is still pending but it should not be pending much longer I appreciate your patience and if you have any other questions your case is temporarily been reassigned to _⁠_⁠_⁠_⁠_”

    I don’t know what to make of this. Release it to what or who? Is this setting up for a denial? I don’t know why they just can’t tell me if I’m denied so I can just rest.

    Any information would be a godsend I’m 100% p&T expedited.

    If approved would backpay be available? Is it from when I initiated my claim?

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  7. Hello I am currently on child benifits through my dad I am 24. I am going to start a part-time job it is a work from home and I was wondering if you knew how this would effect my benifits. I also get $48 from ssi.

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  8. I’m currently receiving DAC and on medicaid/medicare. I’m interested in trying to work. I know there is a medicaid for working disabled but my DAC is about $50 or so dollars over the limit. Not sure if I worked enough to bring what I receive down if that would qualify (and that would be almost full time which I’m not sure I can do right away). And if I lost my medicaid then the medicare fees would bring me under…

    as mentioned above medicare on its own can be expensive and there are alot of benefits of having both

    Where would be the best place to find out what my options are that would have my best interest? The medicaid office here seems to look for a reason to cut people off so I don’t trust them to give an honest straight answer.

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  9. I am a combat veteran who is 100% disabled by the VA. I was considered 50% disabled before the age of 22. Five days after turned 22 I was awarded 100% disability. All of my medical records were from the army which was my first and only job. I have not held a job since due to my disability. My father has passed and I am now applying for DAC. I was told my application is being fast-tracked but it’s been a few months. The only information I am getting is that it’s still pending medical review.

    Because of being five days after my 22nd birthday for full disability, are they going to deny the claim?

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    1. The date of your VA award probably won’t have an impact… What will matter is your medical records from before age 22. Do you know if these records still exist? You might want to do whatever you can to track down these records and make sure everything gets to the disability examiner. Some readers report that Social Security made a decision without getting all of their VA records.

      Liked by 1 person

      1. I was diagnosed with anxiety, PTSD and bi-polar with a honorable discharge before the age of 22. All of those records are from the military/VA. I was diagnosed due to my service in the military.

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      2. I do have an onset date from the military by a military psychiatrist I gave that to the examiner rather faxed it and if you see the above post that is what was said to me before it went to a decision was made. Bear in mind I only had one iota of onset day evidence. The military psychiatrist who diagnosed me and I apologize for making such waves on the form but I am rather interested to see your opinion as a current a decision has been made and I am awaiting disability determination services answer in mail. hoping for the best praying for the best usually get the worst. God bless.

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  10. DAC benefits: Waiting on the approval letter – I just spoke to an SSA agent about status. Lately these agents are super friendly and helpful – what a positive change. Seems that the DAC could receive Medicare right away plus a
    Medicaid continuation program to cover costs that Medicare does not cover. So we might still have the asset issue that I’m concerned about. She lost SSI/Medicaid a few years ago temproariy due to having more than $2k in an account. It was my mistake and it is real.
    What I found is that the Able account could solve this. If one is not on SSI but using Medicaid then the Able account
    can go over the 100k limit (here in Florida). This will let us build up funds for her future support, maybe with a trust to replenish the Able account..

    Liked by 1 person

  11. I love the paintings on your site. Thank you for supplying such thorough information. I’ve just started the process of trying to track down medical records from before I turned 22 and am worried about the possibility that my old records have been thrown out. I have more recent records however, that list the onset age as 15. Do you think the newer records referencing the earlier diagnosis would carry any weight? The newer records (past nine years) are from Norway where I am living now. My father (still living in the U.S.) and my mother (living in Norway but collecting part of her retirement pension from the U.S.) have both recently started receiving social security retirement benefits from the U.S. with my mother drawing from my father’s credits (she has her own credits but was told to use my father’s because he has more). I hope I can still apply from here. I was rejected for disability benefits here because they said I was already disabled at the time of my arrival and thus not insured. They want me to apply in the U.S. but disabled adult child benefits would be the only kind of SSDI I would qualify for.

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    1. I don’t think this will qualify, unless the doctor who wrote it knew you before age 22. You can certainly try. If you can get anything at all from before age 22… school records, hospitals, anything, that would help a lot.

      Liked by 1 person

    2. Hi Sharon, this is a complex situation because you live abroad. We just went thorugh the process for DAC benefits for our daughter. She is diabled on Medicaid and SSI since she was 17 years old. DAC benefits will be better because they are not asset restricted and could be paid while living abroad. I think one needs to visit a US based doctor every so often to proof that the disability is still valid. We likely cannot go abroad as travel would affect her greatly but maybe someday. So your case is difficult in many ways, first you need to apply for disability here. You likely need to be present or represented by someone to apply at a SSA (Social Security Admin.) office. They can advice you on your options. I’ve had some excellent advisers working with us. One needs to ask for a disabiltiy specialist and if the first one is not helpful ask for someone else. I think some medical records/exam from a US provider (in addition to the ones from Norway) would be helpful.
      I also wonder if you couldn’t get help in Norway if you have their citizenship. I would try that again as well.

      Liked by 1 person

      1. Thanks for taking the time to share this info Thomas. My understanding is that I’m supposed to apply at the embassy and that the U.S. is required by a social security agreement between the U.S. and Norway to accept my records from here, but I could be mistaken. Travel would be very difficult for me so I hope I won’t have to go to the U.S., especially as I no longer have medical insurance there. I am receiving what they call economic social help here which is similar to SSI and has similar restrictions. Wishing you all the best with your daughter’s application!

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  12. Update: Some readers are reporting that Social Security has recently changed the rules and is making it harder for Social Security employees to process these cases. Some employees are dealing with this by telling you to collect medical records and proof from before age 22. You do not have to do this. It is NOT your job to get medical records from the past. If they give you any problems, send them these rules for Collateral Estoppel, They are required to approve you, and if they have lost the old medical records, that is their problem and not your responsibility.

    EM -19019

    B. Background

    On 02/14/2019, we instructed all FO technicians to stop making collateral estoppel disability determinations and to refer all subsequent disability claims to the DDS for their consideration on whether collateral estoppel applies or if a full medical determination is required. On 03/11/2019, the EDCS flag for potential collateral estoppel cases was added to the electronic folder flag list.

    C. FO Instructions
    Note: Technicians are no longer required to document the SSA-3367 with remarks “Potential Collateral Estoppel Issues Apply”, nor are they required to add the message in EDCS: “Existing favorable decision on (T2 or T16) dated MM/DD/YY. Collateral Estoppel does not apply”.

    Once the flag is added, do not remove it unless the flag was added erroneously (e.g. claimant is not currently entitled to disability benefits). The flag should remain on the folder at all times, including at case closure and for determinations where DDS decides not to apply collateral estoppel.

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    1. Thank you so much. I am wondering if you think what is written in the blog post above is still accurate? It feels still accurate to me, because what you’ve copied here doesn’t reflect a change in the collateral estoppel rules, just in who makes the decision (dds or field office). Am I missing something?

      There is already included a note above that people who returned to work after age 21
      may not be eligible.

      Like

      1. potential public comment

        i was asked to fill out forms beyond just an application
        i was forced to fill out a new SSA-3368 & SSA-827
        it seems like it now more complicated than DDS just using previous case information/decision and it seems like DDS can decide not to follow the rules of collateral estoppel based on the accuracy/discrepancies filling out ssa 3368
        i have never work so that is not the issue
        so it would be nice to know if your other readers are being asked to fill out new disability forms and how DDS is handling the rules of collateral estoppel in their case
        i have not found any information on why collateral estoppel shouldn’t be applied to my case
        i haven’t been approved or denied yet but it makes me nervous the emergency message saying Potential Collateral Estoppel Issues Apply & determinations where DDS decides not to apply collateral estoppel.

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    2. I filed 2019 tax return claimed head of house hold with dependent daughter age 26 on medicaid since 2005 Why did we not get her stimulus check only got 1200 for me and I am applying for SSD became disabled Sept 27 2019 lost my job

      Like

    3. Applying for my son who is 31years old. He has schizoaffective disorder and was deemed disabled prior to 22. Today I received a packet of forms It seems as if he has to requalify for disability benefits. The form number is 3380BK and it is 10
      pages long. It worries me because thanks to medication he has been stable for quite a number of years. Stable in that he is not actively hearing voices. He has never worked and his meds make him sleep roughly 15hrs as opposed to a regular persons 8 hr schedule. He sees a psychiatrist every 3 months at this point and has monthly blood work. This is how it’s been for about 10 years now. I’m concerned whoever it is who reviews these forms will consider him cured, or something. He is just doing as well as possible. I didn’t relalize applying for this change could potentially cause him to lose his existing benefits. Should I be worried?

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      1. I understand your fear and have similar thoughts. After years of very difficult times we now have some stability. We make any effort to offer a safe environment. An outsider could think that all is normal but it is a daily struggle only loving parents will endure.
        The fact that your son sees a doctor regularly and cannot live independently should protect his disbility status.
        I guess it is all about the paperwork and one needs to describe the “worst” days even that can be hard. We applied for DAC too and are still waiting for apporval (going on 5 months) The SSA office now says it will take 120 days and there could be a delay due to Covid. Yes and the last thing we need is to loose the disability status because of some problem with paperwork.

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        1. Thank you for the reply. My local SS office told me 3 month time frame due to COVID. It’s good to know I shouldn’t worry if it takes twice that amount of time. I don’t mind the wait. My goal is just to give him the ability to have adequate resources when I’m gone. That is a worry I can’t escape.

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        2. I was 34 when I started receiving DAC. I had to get a lawyer to help me since alot of my records were destroyed before 22 It took a 2-3 years to get a hearing. So it’s hard but not impossible. I didn’t lose my SSI benefits applying. Although keeping medicaid is a different story if you get any backpay forget about trying to save it, you’ll have to spend it down very quick. You’ll no longer be dealing with SS but your local medicaid office which can be hard.

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      2. If he is denied his benefits likely won’t change. My brother applied and got denied due to misplacement of medical records and he is still on SSI for now. The lengthy packet is pretty standard also.

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  13. My daughter and her brother both receive the same amount of survivor benefits from their father who passed away.
    My son just turned 18. Will my daughter get an increase. SS said she is receiving 75% of his pia. It’s hardly enough to help pay for childcare. I’m a single parent and work full time. Can this be appealed? Thank you so for any information.

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    1. Sadly, I don’t think the amount increases if it drops from two people to one person.

      I do not know the rules for spousal benefits. Have you looked into whether you qualify, since you are caregiver for one of his children? The thing I am not sure about is whether you would qualify while working full time.

      The son’s check should continue til he graduates high school, longer if he is disabled.

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  14. The disability onset date for a relative’s SSI is the date he applied. Because if they actually made the onset date when he became disabled, they would owe years of back pay. I was told this by a SS rep.

    It is wreaking havoc now that the relative is an adult orphan and should qualify for SS under his parent(s), because the onset date is after age 22. IDK how to help. His initial application was denied. We are moving on to appeal. But he had to go on homeschool in high school, has never worked, and pretty much cannot leave the house due to his condition. His parents supported him, and now they are both gone within about a year of each other!

    And I don’t think there are any medical records to support his adult child claim. Even if there are, I wonder if they are too old to sucessfully find. He currently gets SSI, but as you all know too well, it is not enough to live on.

    Any help would be appreciated. We don’t know how to prove to the SSA that he was disabled before age 18/22 ( we have been told different age cutoffs as well).

    Please, please help. Thank you.

    Like

    1. Unfortunately, it sounds like someone wrote down his onset date as application date when he applied 😦 Sometimes people who work at local social security office do that when they don’t understand the rules well.

      The only solution I know: You or someone from the family is going to need to track down some kind of proof of the past… there is probably no possibility social security is going to do this for you. Anything that has any health or disability assessments in the file: School records, medical records, hospitals, evaluations, day programs, foster care, prisons, etc, anything you can get, if it still exists, or if any family member has it lying around in basement, etc. Was he ever on SSI as a child?

      https://howtogeton.wordpress.com/2017/03/28/how-to-get-around-expired-work-credits/

      Like

  15. I should add, if you worked after the age of 22, and earned over the limit, then you may have to take more steps. If you did not work over the limit, it is not your job to prove when you became disabled, and you don’t need to collect old records. Being on since age 19 is enough. See notes above on collateral estoppel regs if you’d like to learn more.

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  16. Hello,been searching all over for info and came to your site so much helpful…….wondring if you can help me……. i was 19 when i became quadriplegic do to a spinal cord injury (car accident) im 41 now; been on SSI and Medicaid since my father who is 65 in process of retiring had an appointment on phone do to COVID, was told i have to apply for CDB (DAC) based on his earnings if not i can loose all my benifts.my mom who takes care of me does not get paid as home aid or caregiver is turning 62 next year and planing to get spouse’s retirement. My questions are #1 Will i loose my SSI benifts if i don’t apply for CDB? #2 If i do apply for CDB i would be getting about $1200 (50% off my dad) but when my mom applies for spouses retirement next year we would be spliting $1200 do to “Family Maximum”,right? #3 If so,Can i stay on my SSI which is almost $950 momnthly, so my mom can recieve the full 1200?
    THANK YOU

    Like

    1. Good question. Unfortunately, it’s mandatory. You have to apply or you’ll lose the SSI.

      Have you thought about getting into a medicaid homecare program and paying your mom? Maybe you already have other aides? Mom’s benefit amount will be very low if she starts claiming at age 62, and then even lower if split with you.

      I may be wrong, but I believe it does not get lowered or split in cases of divorce. Also, for survivors both checks would go up significantly.

      I hope things go well for your dad. 🏵️ 🌼💛 

      P.s. 950 is high for ssi. Are you in CA?

      Like

      1. thank you for the advise.is there a time limit to apply for DAC? I am in CA i get $780 from SSI and $160 from SSP

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        1. Sorry one more question how long does all the process take?i read most of your site; where you say to gather all medical info but ihave no proof of medical records that i was disaibled before 22, would recieving SSI since 19 be enough proof?

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            1. I applied for DAC back in July 2020 and I have been on SSI since 2006 which was when I was 19 I was told that they needed help to gather my documents because they had been purged so now got all documents back in but I’m still waiting on a decision its with the medical doctors of DDS to review I’m worried about my 6 year old child and myself facing homelessness now my lease is up tomorrow I have SSI but my complex needs my award letter to show that there is an increase in my income and I have no way of getting it what can I do I am so stressed and drained.

              Like

          1. I should add, if you worked after the age of 22, and earned over the limit, then you may have to take more steps. If you did not work over the limit, it is not your job to prove when you became disabled, and you don’t need to collect old records. Being on since age 19 is enough. S

            Like

        2. There is no time limit.

          However, If you were approved for disability before age 22, then it is mandatory to do it as soon as parent dies, retires or becomes disabled.

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        3. I want to apply as an adult child. My disorder was diagnosed when i was 18….i worked at above SGA for two years. Is there any way i can have former employer verify that i had special accomodations, and lower my SGA so i would qualify for adult child benefits?

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  17. Its taken me over a year to get to this point in my DAC claim and this website has been invaluable and awesome to me. Truly Thank you. I was awarded SSI when i was 29 onset date of age 26. My father retired two years ago and I came across your site. I am non married on SSI for 10 years now age 39 and actually have some old medical records from age 19 to current that were not introduced in my original SSI Claim showing disability onset date may be challenged .- Hospitalizations and brain scans that hopefully show medical evidence of disability prior to age 22 being treated for the illness at age 19i. I walked into SSA office and they literally coached me through the whole thing such generous nice help for real good people. I have applied for DAC with their guidance since my dad retired recently. I have not worked more than 6 months at a time since age 22 nor gained more than 600$ a month during spotty jobs i could not handle with my illness. I went to school but never graduated college due to hospitalizations and side effects of medications. I am now about to see ALJ (probably phone interview since covid-19) The 1st appeal they wanted more medical evidence which will be provided and was recently surfaced ,rare hospital kept records 20 years old and my moms basement was stashed a few records lol. The 1st appeal adjudicate person was really interested in the claim even called me asking questions and I answered honestly. Unfortunately I did not find the new medical documents (new to them evidence from age 19) until now but have not had my ALJ hearing yet. At this point i Hired a top notch Lawyer cause we are talking about literally award benefits doubled to $1350 a month and some 15,000 – $20,000 in back pay for 1 year max SSDI at 50% off my fathers account, my dad who receives Max SSDI retire payments for past 3 years but I am only eligible for 1 year retroactive. Im worried they will reopen my case and I will loose the SSI i do get now. My ALJ hearing is in a few months I Will keep you updated on how it goes. Truly thank you for what you do and for this valuable info. Joshua

    Like

    1. Hi Joshua,

      Great work!!!! I would love to hear how this unfolds for you. I don’t have any reason to believe they will reconsider your current benefits unless something significant has changed with your health.

      I would love to hear how this goes for you, Amazing that you got those old records. Please report back. 🏵️ 🌼💛 

      Like

  18. Quick question as I stated before AS A sent my husband paperwork stating I may be eligible for D A.C. Benefits under my father’s SSDI earnings since I was disabled since 21 and my husband is on ssdi but my question is this I also receive a spousal benefits from my husband’s ssdi it’s a small amount since we are at the maximum for our family. Will this factor inhibit my ability to collect off my father’s record which has a substantial amount more monetarily than I currently get between ssi and my small $56 spousal benefit. How does my husband’s family maximum figure into the equation. Would the DAC max be based on my father’s family max?

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  19. This blog has been so informative, thank you! Completed my phone application for SSDI disabled adult child survivor benefits. I’ve been on SSI since age 6 and they list my disability onset date as 1992 but they are saying I need to prove I was disabled before age 22. The thing is I don’t really have access to old medical records and the nature of my disability(cerebral palsy) is due to a birth injury and They won’t even diagnose somebody with cerebral palsy after a certain age so it’s not like I’m lying. I’m thinking I’ll just be denied without more proof. Very frustrating

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  20. Hi sleepygirl! So I wanted to let you know how things went. I did get approved for DACB! If you ever want to talk about how I got approved, so that you can help others, please feel free to email me, but I did a lot of what you suggested on the website. Thank you so much for your help, time, and all of your resources.

    Unfortunately, I am in a predicament now because I have had medicaid and I am set to lose that when my Medicare starts. I live in NM and they claim that in looking at my records with Social Security, I never officially received SSI, so I can’t keep the medicaid that I am currently on. I can try to apply for a waiver, but there is no guarantee when or if I will get it. Here is the issue, I was approved for SSI, I have a “test” deposit from SSI into my bank account, but I chose to go forward with DACB instead of SSI (because one of my parents retired). Also, I spoke with a representative from the State and they said that if I had just received one SSI payment that I would have been eligible to keep the medicaid that I am on. Is there anyway to appeal the ruling that I never got SSI? Or is there anyway to refile for SSI without messing up DACB? My DACB is higher, that is likely why they cancelled anything with my SSI. Any advice that you can give me, I would sincerely appreciate it.

    Like

    1. Congratulations.

      Excellent question!

      You can certainly apply for disabled medicaid and appeal the termination and enclose your proof. I have no idea if the test deposit would be enough to qualify.

      If your DAC check is too high, there’s no way to get SSI, but….

      One reader here had a very clever idea and I don’t know if they ever tried it:

      Open a PASS account (only possible if you plan to work or go back to school)

      Place the DAC money in PASS.

      DAC stops counting as income.

      Then become eligible for SSI.

      When PASS closes, you lose SSI and get DAC back…

      I don’t know if it works and pass accounts are hard to get approved, but if you decide to try I’d love to know 🏵️ 🌼💛 

      a few other options here: https://howtogeton.wordpress.com/2017/02/01/how-to-escape-medicare-fees/

      Like

      1. Thank you for the reply. Sorry, but is the disabled medicaid through the state or the feds? The state suggested the waiver program, which I am trying now, but they warned me that it’s a state ran program. I don’t know if it is even worth trying to call Social Security and talking to someone about it. Usually I do NOT have good results with the phone representatives, the field offices are so much better, but that is not an option right now. I have found that the phone representatives don’t always give out the correct information.

        I can’t leave the house, so getting PASS approved for work purposes would be impossible. I could do some online school, so that is something that I could try doing if the disabled medicaid fails. If I was able to get a PASS account and DAC stopped counting as income, do I also lose medicare?

        Thanks so much!

        Like

        1. It’s through your local medicaid office. Social security is not involved.

          You don’t need to leave the house to work, many disabled people do small jobs from home or from bed, or make and sell art or other things on etsy and such. Or go to school as you said.

          However, whether or not a pass plan would be approved and this would all work… I have no idea.

          for a waiver: It will depend almost entirely on your care needs. It’s good to learn as much as you can about the program, as many folks get turned down: https://howtogeton.wordpress.com/2017/07/26/how-to-get-a-caregiver-through-a-waiver-program/

          You keep medicare no matter what. Please let us know how it goes.

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      2. My mother was collecting SSI while I was a minor i am now 40 my mother is Deased. I need to know if the Social security office owes me money for the entire time being while she collected as I did not be placed on her SS growing up.

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  21. My husband is my ssi rep payee and recently he received a letter stating that I could be eligible for adult disabled child benefit. I have been on ssi since I was 21 but since I’ve been married before I turned 21 I thought I wouldn’t qualify. However my husband is on ssdi and my father is on ssdi as well. He wasn’t disabled when I originally got ssi. Could that be why I was sent this notice? Also does my husband being on ssdi preclude or factor into this in any way?

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  22. Hi,
    My husband passed away when I was 8 months pregnant & also had a 4 yr old. We all received survivors benefits off of family max paid in by him. My youngest was determined Disabled by Social Security at age 16 & receives DAC & mine is because of care for him. With his DAC he had Medicaid till age 19 no cost shares. At age 19 he had to go on waiver with Care Wisconsin & now has Medicaid & Medicare. My question is. In the beginning of having Medicaid waiver his DAC was disregarded as income. Now They are telling me it isn’t because he didn’t receive SSI. This I don’t understand because Medicaid WI handbook says DAC payment is disregarded if initial payment caused ineligible for SSI. To me this sounds like his case. He wasn’t eligible for SSI because he was already receiving DAC benefit. Because of his Benefit not being disregarded he would have cost share of $141. Unless he applies for MAPP. & has inkind form of payment. So Now he has MAPP but can’t work. If he works he can only make $47.50 a month. One penny more & he has a $700 MAPP premium. More then he even makes. Do I need to apply him for SSI so he is denied then his DAC payment is disregarded so he can work? Care Wisconsin takes most of his benefit & he can’t even work because of outrageous Premium.

    Liked by 1 person

    1. Gosh, I’m sorry I don’t know the solution for this. I had no idea premium could be 700
      😦

      The rule I have read is that the continued medicaid for DAC is only for people who lost SSI…. it’s a bit tricky if he never was on it. I don’t see a way he can apply for it now.

      It looks to me like income limit for medicaid waivers in wisconsin is $2,349, I don’t know if he’s over that. If not he might be able to just stay on medicaid through the waiver?

      Liked by 1 person

      1. Yes, he is on a Medicaid long term support waver. He is on MAPP so he doesn’t have cost shares. His problem is he can’t work & Care Wisconsin gets most of his benefit. I’m sorry if I wasn’t clear. The premium is for MAPP. Because he isn’t getting the DAC disregarded his income he doesn’t get is to high. He can make $47.50 a month. One penny more & he has a $700 premium for MAPP
        I don’t understand the Medicaid handbook 25.2 disregard for DAC. He lost eligibility for SSI due to DAC payment. Had a informal denial. The discrepancy is what does lost mean. It says in 25.2.4 An individual who loses their SSI eligibility due to receipt of an initial DAC benefit
        #1 The DAC payment either initial or increase which made them ineligible for SSI

        So Medicaid is telling me he didn’t get a SSI check or never applied. This is because his DAC benefit made him ineligible for SSI, so social security gave him a informal denial. He meets all the requirements except for never getting a check. Lost a parent, disabled before age 22 & became ineligible for SSI due to DAC. The miss leading part of the handbook are the examples they all refer to someone loosing their parent or receiving their DAC after they already on SSI.
        I get I don’t get the difference they are both disabled, both lost a parent, & lost SSI. The difference is the one that gets the disregard can work & the other can’t.
        How do I get help with the discrepancy in the Medicaid handbook. I’m running in circles. It’s sad he can’t work or have his benefit

        Liked by 1 person

        1. I’m sorry that I don’t know the specific rules in wisconsin.

          This is the federal policy I am aware of and it pretty clearly states it is for former SSI recipients:

          https://secure.ssa.gov/poms.nsf/lnx/0501715015

          However, if the language is vague in the wisconsin regs and you want to pursue it…

          You could always apply for SSI and insist you need a written denial…

          Then do an appeal on the medicaid denial and enclose your SSI denial plus the state regs, and if not successful, keep appealing, see what happens 🙂

          It’s certainly worth a shot, but might also be a lot of work without outcome.

          Does MAPP allow any exclusions like impairment related work expenses? He might be able to stay on MAPP and earn more if he can get some things excluded. https://howtogeton.wordpress.com/what-does-social-security-consider-an-educational-expense/

          Liked by 1 person

          1. OMG. AFTER 2 YRS. You help me feel like I can get some answers. Right now untill the DAC disregard is figured out. I’m trying to find out if court ordered amounts are a disregard for MAPP income. He isn’t in school. Do you Know how the PASS works? Am I able to get a PASS on his DAC benefit to make it low enough that he is eligible for a SSI payment? Then Capital Consortium ( Medicaid) would have the (check) that is the issue because of wording. I don’t know what is all eligible for a PASS. but from what I understand what the amount is that is put on a PASS isn’t counted as income so then SSI can be paid. Does the PASS amount then get paid back to my son? Would his Care Wisconsin then be recalculated for that month. His placement amount % ( different county to county) he has to pay is based on his DAC amount that he receives. He is on a protective placement with court order. Long term care Medicaid is through Care Wisconsin. I don’t want to mess up his placement & then he owes more for the Adult family home… man this is so confusing. All so he can work. Quality of life can’t go anywhere or do anything. Not even work. All because of the word loss in Medicaid handbook…. ?

            Liked by 1 person

            1. Ok, you are a genius. A PASS plan didn’t occur to me.

              I don’t know anything about PASS plans, but this is very creative and smart thinking.

              A few thoughts, which may be incorrect:

              1. yes, I have read that you can put SSDI or DAC funds into PASS, and that could make someone SSI eligible.

              2. the funds in PASS are his, but spending is restricted to whatever goals are approved in his plan. I’m guessing he doesn’t have to put the entire check into the PASS, just the amount he needs to meet his goals.

              3. as long as he qualifies for $1 in SSI, I believe he becomes eligible for SSI medicaid. Some states you have to apply for SSI medicaid and some states just put you on automatically.

              4. To get SSI, I think he’d need to apply. They will collect medical records and do an official disability decision. Since he’s already on, shouldn’t be a problem, but you have to go through the process, and of course want medical records to be strong and accurate.

              5. I’ve heard it’s difficult to get a PASS plan approved. If anyone can do it, I think you can. Yes, PASS is for school and/or working. Since he is trying to work, he would be using it the right way.

              6. Once the PASS ends and SSI stops, then could look into the medicaid contiunation as former SSI recipient. I’ve heard some medicaid offices do it automatically, and other offices have no clue and no one on staff that has ever heard of this rule.

              Liked by 1 person

          2. Frustrated! Talked to Social Security. Was told only SSI not DAC can use the pass program. Capital Consortium & 3 senators office & DHS told me Medicaid hand book clearly states he had to have received a ssi check & lost SSI due to DAC. Denial isn’t enough.
            In other words parent had to retire or die after SSI. People that loose a first parent so the DAC payment causes them to be ineligible for SSI even if otherwise they would be eligible never received a check, So there is no disregarded benefit. So sad I get know help for him. The outcome for both is the same. Disabled before age 22, lost eligibility for SSI & lost a parent. Why does it matter if he got a check. The only difference is when the parent dies. Because his father died before he didnt get a check. My son still can’t work because of MAPP premium.
            I don’t know who else to talk to. Who rights this ridicules DAC benefit disregarded rule in the hand book?. He can’t be the only disabled person that this is affecting.

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  23. Hello,

    Wow…your blog is awesome! Thank you so much for all of your helpful information. I’m hoping that you can help with my question. My husband unexpectedly died six months before my daughter turned 18. She has been disabled since birth and I provide her with around the clock care.

    We had everything ready to apply for SSI when she turned 18 but he died before we could do this. Thankfully, she is receiving DAC-RSDI survivor’s benefits and I was able to get her on an Under-19 Medicaid program. Unfortunately, she is losing her Medicaid at the end of the month due to turning 19 and her Medicare will not begin for another 10 months.

    Because he died before she turned 18, she never actually received SSI (she just went right to the Disabled Adult Child benefits). Does this mean that she is not eligible for the provision that allows her to save Medicaid? (I put your quote at the end for reference).

    I plan to take care of her in our home for as long as I’m able. I really worry about her wellbeing after I die. We set up a Special Needs Trust to protect her eligibility for SSI/Medicaid but his death changed that to RDSI/Medicare. Will not having Medicaid prevent her from living in a nice assisted care facility?

    Thank you so much for your help. It’s so hard to find people who really know the ins and outs of this stuff.

    “Luckily, there is a special secret rule that says you cannot lose your Medicaid by making this switch. Even if you have too much income for Medicaid now, you still get to keep it! And you get to keep the Medicare too! Good deal.”

    Like

    1. I’m not a expert nor do I know the state your in. My son’s father died before SSI also. He receives DAC. Had Kattie Beckett Medicaid. For the year between Medicaid & Medicare we had to have a Medicaid waiver. The problem is the DAC benefit is larger resulting in cost shares & because he never actually received a SSI check his DAC benefits are not disregarded & are counted as income. This does become a problem even if there is a formal or informal denial of SSI due to DAC benefit. There is only a disregard if a actual SSI check is lost. Try to do what ever you can to get a check. No luck here in Wisconsin. This needs to be changed in the Medicaid handbook but good luck getting anything out of the government 😒

      Liked by 1 person

  24. Hello there,

    I have a couple questions, perhaps you’ll know the answers.

    For many years, I have received DAC benefits from my deceased father’s social security. In 2016, I got a letter that my father’s ex wife, (not widow) would be drawing off his social security and my monthly check went down by about 150.00. It was quite shocking and had a huge impact with only about a week’s notice.

    I don’t know much about this lady. My dad had divorced her and been remarried for several years before he died. I never really knew my Dad. He was 46 when he died and would be around 70 today. I’m assuming the ex wife is about 65 or so. They were married for more than 10 years.

    I’m guessing that she should be able to draw on her own social security soon. Will she still be entitled to part of his benefit or might I get my money reinstated?

    Question #2 is: My mom just retired. I “assume” her benefit is probably more than my father’s due to her working 20 years longer than he. If I draw on her social security, would it affect her check? I wouldn’t want to do anything to change her income. I’m afraid to even bring it to the attention of social security in case they decide to automatically change it.

    Thanks in advance!

    Like

    1. Hi Wendy,

      Ok, I don’t know a great deal in this area…

      Yes, it is a GREAT idea to look into your mom’s income record. this will not impact her check in any way, and if the switch helps you, problem solved!

      Unless someone else is also drawing off her income record… then same thing could happen to them…

      Perhaps schedule an appointment at local social security office to inquire about which record is higher. If no one else is drawing off either record, and mom is still alive, you may be getting 50% of moms and 75% of dad’s so the switch might not benefit you.

      Appointment can be a phone appointment or in person, but I would schedule rather than asking random person who answers the phone.

      Now for the first question, I was under the impression that maximum family benefit didn’t apply to divorced family members…. I may be totally wrong… If I’m able to find the rules I’ll come back and post.

      I was also under the impression that survivors benefits were 75% per person, and maximum family benefit is typically at least 150%… is there a third person also drawing off his income record? Again I may be wrong.

      I am not sure if she will switch to her own benefits, it may depend which one is a higher amount for her.

      Hope this helps.

      Like

  25. I found out a social security loophole that is not listed on your site. When someone starts receiving Disabled Adult Child benefits it is possible for their parent to start receiving social security early or have their benefits increase. It is called a Child-In-Care Spousal Benefit. That parent must be: a parent of the DAC recipient; the spouse (or ex-spouse?) of the person whose work record the DAC is receiving benefits off of; and providing parental responsibilities and/or personal services to the DAC recipient. (Note: This usually includes living together, but not always.) If they are, then that parent is eligible to receive up to 50% of the other parent’s full social security benefit amount just like the DAC recipient is. This amount can increase to 75% if their spouse dies. Caution: a parent receiving this benefit can be subject to an earnings limit. So be careful about claiming this benefit if the parent is working or already being paid as a home aid. Also, all the social security benefit recipients would be subject to the Family Maximum Benefit rule, which might cause a decrease in the DAC’s benefit amount if the spousal benefit is also being collected.

    Hope this information helps someone get some extra money.

    Like

  26. Can I get DAC if I was considered mentaly disabled (bipolar)at age 10 years old. I worked as teachers aide. I’m married to someone who gets SSDI. I’m on TRS DISABILTY. Do I qualify for DAC?

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    1. I may be wrong about this, but I don’t believe you would be eligible if you worked full time for an extended period after age 21.

      If I am wrong, and you are eligible to apply, you would need to get or have copies of medical records from before you were age 22.

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  27. Hey, thank you for your information. I was wondering if I’d be eligible for these benefits if my onset disability date (the date they determined at least) is when I just turned 22? I had been experiencing symptoms of psychosis a year prior, but I don’t think I want to go through the risk of trying to appeal the date. Thank you for your response in advance!

    Like

      1. I did go to a judge and have a hearing to get disability. I don’t know if that’s who made the disability date decision, though.

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        1. Ok. So in my understanding, you wouldn’t automatically qualify if your onset date was set at age 22.

          You could put in an application for DAC, and then enclose as much proof as you can get that symptoms started earlier (if you can get any old medical records).

          This is just my opinion, but I think a disability examiner would be less likely to make a decision different than the judge made. It’s possible, but it’s also possible you would need to appeal.

          If you want, you could always submit the application and see what happens, then decide later if you want to appeal. 💛 

          Like

  28. I receive SSI for aspergers, depression, anxiety, and morbid obesity and I started receiving it at age 21. My condition and ability to function is miles better now, at age 28. My last CDR was in 2015 and they continued SSI. I have tried various part time jobs for fairly short periods of time and am trying to get into full time work. Some of the jobs I’ve tried would be considered challenging for someone with a disability, but my income levels are still low.

    My dad recently retired and I got a letter for applying to DAC benefits. They sent me a daily activities report form.

    I’m wondering do I fill it out with information that would be relevant for the me “now” or fill it out by “going back” to my mental state from before 22? Should I stop trying to build myself up to full time work?

    Like

    1. You may be able to call the person who sent the form and ask them.

      In my understanding, you would answer about your condition now. If your condition has significantly improved, they may do a closer review of your medical records to try to make a decision about whether they still consider you disabled.

      I can’t give input on work… really only you know your body, how well you are, and what you are capable of. I hope it goes great for you whatever you decide.

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  29. Thank you so much, Amy! (And Sleepygirl.) I’m so glad your mom still has her kidney. That is awesome! I’m nine and a half years “out” of surgery and kidney-wise, my nephrologist has only seen 1-3 people other than me with this perfect kidney function after nine years. (He said many people still have kidneys this long, but usually, their function has declined at least a little bit after a decade.) He believes that if all goes well, I might be one of the people to make it to the 20+ year mark, though my POTS has him terrified because he has never seen it before and in his own words, “it’s freaky!” He is great. My cardiologist is great, too, and if he knew I was worried about him writing ‘non-compliance,’ there’s a 98% chance he would smile and very kindly say need more Paxil (and I probably do! I’ve had debilitating anxiety since childhood that has mostly been in remission since 2009 with Paxil, though I have flared over the past few years.) But I thought the same about another doctor I know longer see (I “fired” him a long time ago), and so I’m super cautious. It’s taken me a while to trust doctors again and get over my not-so-great doctor who basically told me my POTS symptoms were me “missing being a sick child” (I kind of got the “you’re-just-being-a-lazy-millennial” vibe, too, though he didn’t actually say that. He DID say the thing about being a sick child! My mom was there, and she was so mad, especially when he kind of blamed her. She has done nothing but been absolutely incredible this entire time. I wouldn’t have survived my teen years without her being my advocate. The fact he acted like she was “enabling me” to “fake fainting” still makes me mad.) Thankfully, I completely trust my nephrologist, and he trusts me. 🙂 I know you don’t have to be homebound to be on SSI, though for the most part I have been. I am definitely homebound now, as I do only get out 1-2 times a week for a few hours with my mom. When I was the very healthiest (which everyone assures me was still not healthy, but I was so sick pre-transplant it’s hard to tell what ‘healthy’ is), I was able to go to church on Sunday (mom drove- we’d be gone 3hrs tops), drive out to 3 hours of community college 3x a week (I drove- and got home and crashed until the next time I had to go), and shopping with my mom on Saturday (“shopping” as defined as being out for 3 hrs tops, mostly riding along in the car- mom drove). That was in late 2013 and it only lasted three months. I tried working in 2014 like I said, and was probably out almost every day (it was part time but they ran me anyway) but was not doing well whatsoever. I ended up hospitalized in the midst of it. So the only period of time I’m worried about- if they were to look back- is late 2013. (Though my mom says, “Hannah, your best friend was the college nurse.” Which was true lol, called her to come get me on the golf cart several times when my legs decided they didn’t want to walk from my first class to my last class.) If I understand correctly, though, they’d only be looking for a ‘disabled’ date, so I think I’m okay. (And I think even if I’d had a CDR in my busiest, “healthiest” time, I likely would have been approved, though maybe not, but only because I had that horrible doctor. I’m pretty sure I could have passed out in front of him and he would have stepped over me and declared me perfectly able-bodied and ‘just faking it,’ even if my pulse was 200. I was very fortunate that I had an anti-rejection-med induced medical emergency a month before my CDR in 2012, because the doctors who had treated me then were able to override my bad doc and say, “she almost died during her menstrual cycle three months in a row, and that was before she ended up in ICU; we’re NOT going to say she’s fit to work, because it’s likely she’ll end up in ICU again.” By 2015, I had only good doctors who understood I wasn’t being lazy… I was sick! With a POTS diagnosis and a good team, I’m guessing it was pretty open and shut… and it should have been, because I had deteriorated POTS-wise. There’s NO way during any of this I could have done one minute more than what I did, and absolutely no way I could have worked.) Thanks again, sorry for the novel-sized post, and sleepygirl, thank you SO much for what you are doing. This site is incredible.

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  30. I cannot thank you enough for this information! I consider myself pretty good at navigating this SSI stuff, but I had no idea that I would (very likely) be eligible for this in 5ish years when my parents retire (both will probably retire around the same time). I have a couple questions I’m not sure anyone will know the answers to, but I thought I’d try. Background: I started dialysis in 2010 at age 18, and ESRD (End Stage Renal Disease) is one of the few instant, no-questions asked (if you meet the financial requirements) approved illnesses when it comes to SSI/SSID. (I had never worked being so young and so sick so I only got SSI.) I was transplanted a few months later (still 18). SSI continues for a year post-transplant and then continues depending on late effects. I was so sick at transplant they didn’t do a CDR until three years later when I was almost 21, and though my transplant was doing awesome, I was having a lot of symptoms (later to be discovered as POTS) and was approved. I was slightly more functional from 2013-2014 to the point I could drive out to community college a few times a week, but I did not have a CDR during that time (even if I had, I still would have been approved because those few days were ROUGH, and I regularly ended up on the ground with near syncope and had to pull over regularly when I drove… I probably pushed myself WAY too hard at times, but I had a lousy doctor at the time who wanted me to “push it.” I did and it almost killed me. I worked at a church for six weeks in 2014- the SSA knew and I reported all my meager part time earnings- but I had to quit. Officially it was due to a difference of philosophy but unofficially (and SSA knows this and a few of my coworkers would agree) my “weird symptoms” were getting horrible. By my CDR in 2015, I had just been diagnosed with POTS and had stopped driving altogether. My function hasn’t improved since then, and I passed my 2018 CDR easily since I’m pretty much homebound at this point. (And thankfully, I have an awesome medical team now with all my bad docs “fired.”) I expect to be reinstated at my next review in 2021- I’m a little nervous about it because my cardiologist wanted me to try a new med (Corlanor) to help my POTS but my nephrologist said it’s too new and likely hasn’t been tested in many kidney transplant patients, and kidney transplant patients’ bodies react VERY differently than the regular POTS population, and to wait. I’m a little worried he would write “non-compliant” BUT I know my nephrologist would override that, saying kidney transplant health trumps POTS symptoms (and he’s right- if this kidney fails it would NOT be good. Right now my kidney function is beyond perfect, which is almost unheard of nine years post-transplant). So here are my questions: (1.) For Adult Child Disability- does it matter what disabled me before age 22? Does it have to be the same illness as what I’m getting SSI for now? Right now, I am getting SSI more for POTS and HSD (Hypermobility Spectrum Disorder) than kidney disease? I had POTS probably since forever but I’m not sure. I got SSI for being on dialysis at 18 but I am (currently) not on dialysis. I wasn’t diagnosed with POTS until 23ish, though we could probably prove I’ve had it since childhood. (2.) Again for Adult Child Disability- I worked very unsuccessfully part time for six weeks. It was a nightmare. Will that mess me up? (3.) Again for Adult Child Disability- if we’re going “back in time” to see that I was disabled before 22 in a few years, how closely do they look at the years between 21 and the present? (I’ll probably be in my early 30s when I apply for adult child disability.) I have been very sick this entire time, but I was slightly better (as in not entirely homebound) for about eighteen months in 2013 and 2014. Anyone who knows me assures me I was disabled during that time but I’m worried (yay anxiety) that they will decide I wasn’t disabled then, just because I was slightly more functional? (My mom says passing out at college and coming home and sleeping during the days in-between classes is not normal, but it’s a lot more functional than I am now!) And (4.) for my upcoming review in 2021- if that cardiologist did write non-compliant for not trying that med my nephrologist said “no” to, my nephrologist can override that, right? Potential dangerous side effects is a good reason for not trying a med, right? I apologize for all these questions and understand no one may know the answers, but my anxiety is flaring (med-induced GAD with panic attacks) and I was wondering if anyone could put my mind at ease. If not, no problem. And Sleepygirl, I can not thank you enough for this website! I regularly refer people to it.

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    1. Hi Hannah,

      These are excellent questions.

      I’m sorry I do not know the answers. I can tell you that so far we have never heard from a reader who was originally disabled before age 22 and stayed on ssi continuously, but got denied DAC.

      As long as SSA considered you continuously disabled the whole time, I would think that’s the most important factor.

      In terms of compliance, Social security does have a regulation that if another doctor recommends a different treatment plan or recommends against a medication, that is a valid reason to not take it. It may not be an issue, but if it comes up, just describe as you did above, if your nephrologist has written anywhere that side effects would be dangerous that would also help. It is very rare that we’ve heard from any readers where compliance was an issue, usually more in cases where someone was truly refusing any treatment.

      Hope this helps.

      Like

    2. I will chime in that working a little and not being able to sustain it should be helpful rather than harmful, because they can see you were earnestly trying but couldn’t manage. I was working a few hours a week when I was approved for both SSDI and SSI.

      SSA’s definition of homebound is that you can still go out a few times a week for things like church and hair appointments and occasional social events. So you may have still been considered homebound during that time you were slightly better. But being homebound is not required to get disability benefits. Just because you can go out for a short time regularly doesn’t mean you can hold down a job for 8 hours. So I imagine that wouldn’t hurt you.

      For the med you wouldn’t take, you could go into your chart records behind the scenes to see what that doctor wrote in your chart. You may have to go or have a caregiver go to a specific location to get those records. Membership services can tell you how. They are not the same thing as what you can see in your chart notes, but a place doctors write notes to each other and themselves. But you have the right to see them. If that doctor did write you were non-compliant, you can ask him to change that to say instead that another specialist advised you not to take it. I would expect it would take more than one non-compliance note to cause problems but I don’t know.

      I also don’t think what made you disabled at any given time matters, but hopefully the blog owner will know the answer to that and the rest of these.

      I’m sorry you’ve gone through so much. My mom had a kidney transplant 18 and a half years ago and she still has it! I hope yours lasts that long. I’m on calcium channel blockers for my POTS and it helps quite a bit. I hope you can find something that helps!

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  31. Thank you, Sleepygirl! I learned more from your articles than anyplace else. Firstly, let me try and give you a short summary of our circumstances. I am disabled and getting ssdi, my daughter was approved for SSI before 22, (and they are now looking at her case for disabled adult child, saying it most likely will be approved since we went right from the approved hearing to the DAC people). She cannot work a FT job. What happens if she gets more than 880 a month and then nothing the next and the next and the next. What happens if it’s a huge check for doing a few days, not full time, but like a freelancer, or independent contractor? So, she could make a very huge amount (for us anyway) for not a lot of hours worked, but then not get that again for another year or more? What would that do to her benefits? And likewise if this were for me as well? Would it be the same for both of us? Could we work like that and still keep our benefits? Or would we lose them, because it’s a lot of money but not a lot of hours? This confuses me to my core. Thanks so much for any help you can give us.

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  32. I started receiving social security disability benefits at 26 and 1/2. That was the age I applied. They approved me 3 years later.
    When my dad died several years ago, and I realized that my disability started when I was earlier than 25, I looked up my medical records, but much of them weren’t available as this was prior to 1988. I called social security and they said they can get records better than I could if I file for adult-disabled- child benefits.
    My question has to do with this: I’m on SSDI and SSI, Medicaid,Food STamps, USDA direct loan, and Section 8 Voucher payments. My dad’s income was very good. It may put me at about 40K a year. I currently have medical bills that are about 12K a year, but that could go down a few years from now. I’m concerned if I get SSDI based on my dad, it could not be worth it as I’d need to pay medicare co-insurance, and lose a bunch of benefits while gaining my dad’s benefits and it would be a whole lot of work, but would I gain any income in the end? Because of medical bills, it’s more difficult for section 8, etc, to run the numbers to see if I’d come out ahead. Any suggestions if it would be worth it for me to apply. It seems once things get set in motion for qualifying for my dad’s benefits, I couldn’t roll it back to where I cam now with medicaid, if it doesn’t work out.
    Thanks for your support

    Like

    1. Hi Sharon,

      A few thoughts…

      I think the first thing you need to know is what they determined as your onset date when you were approved. Before or after age 22?

      If it’s 22+, you can try applying still, but to be honest it may be difficult or (likely) impossible to get any medical records that far back.

      Section 8 can deduct medical expenses over a certain amount. DAC benefits would be way less than 40k 🙂

      hope this helps

      Like

          1. Dear sleepy girl,
            Please help me if you can. My son is 35, has been on SSI and Medicaid since he was 20 due to a mental illness (schizophrenia). I am a retired educator and would like to start drawing my social security. I have been told by SS that my son would more than likely qualify for the DAC benefit. Because his SSDI check will be $9.00 over the federal poverty level, I was told by South Carolina Medicaid, that he would no longer qualify for Medicaid. The waiting period for Medicare is 2 years. Because of my son’s frequent hospitalizations, his ongoing mental health care, and his prescriptions, losing Medicaid could cause a major financial crisis for both of us. I live in SC and my son thinks he would like to move back to SC. For the past year, he has been living in a Section 8 apartment in Minnesota. SC is not a Medicaid expansion state. Minnesota is a 609b state. I have not called Minnesota to see how receiving the DAC benefit would affect his UCare (Medical) insurance there. My main concern is finding out the true facts about this situation because I want to make the best decision for my son. I have received conflicting information in my quest to find answers and it is frustrating and disappointing. Do you have any input? Any information or insights you can give me will be greatly appreciated. And again, thank you for your dedication to helping people living with disabilities.
            Sincerely,
            Madelyn

            Like

            1. Hi Madelyn,

              I believe your son would be eligible for continued medicaid eligibility as a DAC. The info and policy are in the post above.

              Medicaid workers often don’t know the rules, so if you run into the problems, you can show them the policy and/or ask to speak with supervisors.

              Hope it goes well for you. 💕💕🌷

              Like

    2. I had to have a lawyer and alot of luck help me with getting DAC benefits after 22. Not sure if that would be an option for you since SS lawyer’s get payed with the back pay and if you’d have any. or have to pay out of your pocket. You’d get 75% of your parent’s SSDI so that might help you figure out how much you get. There is the ABLE bank account but I’m still not sure how it works with what counts as income or depositing money. It’s supposed to help you keep some money and not count towards some benefits but I think if your SSDI check is high enough it will still count against you even if you put some of that money every month in an ABLE account.

      There are medicare savings plans you could check into. It would be nice if there was a place or service that helped with navigating all these benefits.I know my local social services feels like everyone is trying to game the system so asking about income and still getting benefits I worry they can just cut everything off then.

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  33. In order to keep medicaid after switching to DAC do I have to have a need for long term care? Like doing the basics of showering, going to the bathroom, cooking, getting dressed? Should the disability just be the same from when I was on SSI/medicaid? If it needs to be basic long term care what other options do I have for medicaid since the medicare premiums can be expensive? if I start work could i do the disable work buy in medicaid?

    Like

    1. There is a link above to the policy on medicaid continuation for DAC.

      My understanding is that you do not need to do anything special to stay on Medicaid, (as long as they process your case correctly). You just need to continue to be under the asset limit and income limit, as if you were still on SSI.

      If you work and go over the income limit for DAC medicaid, there are other types of programs that may be able to provide medicaid while working.

      If you switch to a different medicaid program and then stop working, I don’t know whether or not you will be able to go back to being eligible for the DAC continued medicaid.

      Hope this helps: https://howtogeton.wordpress.com/how-to-get-or-keep-medicaid-while-working-with-disabilities/

      Like

  34. Can anyone explain the pros and cons of an ABLE account? I just learned about it and at first it sounds like a good idea in the future, to put backpay in or if I ever start working over the limit for DAC or medicaid. The DAC work limit is about $17,500- if I ever happen to work over that and had it put in a ABLE account then my DAC benefits would stay the same? Just trying to make sure there is no fine print or anything bad I may be missing.

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    1. Good questions.

      An ABLE account won’t change or affect any of the work policies. You still follow all the same social security work policies.

      What it will change is savings. If you are worried about going over the asset limit for Medicaid, and ABLE account can help with that.

      Like

      1. I have an ABLE account. It is against the law for anything kept in that account to be counted as an asset against any program at all. In fact, legislation was just passed a couple months ago to clarify that.

        As you may know, You have to have been disabled before age 26 to qualify for an ABLE account. But they don’t make you prove it. I didn’t get declared disabled until older but my medical records show I was in pain management classes and other serious health issues before that age, so my doctor wrote a letter saying I was disabled before that age. I don’t recommend getting an ABLE account if you clearly were not disabled young because even if they don’t check now, if they ever do you could lose SSI and be billed for past payments since whenever you opened the account. Instead, fight to get the age changed so you can have one legally. There is legislation in process to do that.

        These are the pros and cons I’m aware of:

        Cons:
        There is a small fee (I forget if it’s yearly or monthly)

        The money left in the account will go to the government if you get healthy or when you die (I think there may be a way to will it to children or nieces/nephews)

        You can choose to have them invest all or some of your money and that means a risk of losing money. I think I lost about $50 last year, but typically I gain some.

        You’re limited in what you’re allowed to buy with ABLE withdrawals. But again, I’ve never heard of them asking for proof. Mostly just don’t use it to buy someone else a present. Use it for your own needs.

        Pros:
        It doesn’t count against the savings asset test for any program.

        If someone gifts you money by depositing it directly into your ABLE account (give them a deposit slip) it doesn’t count as income. (There is a limit of how much can be put in per month and year, but it’s quite large.)

        I find the pros to outweigh the cons. I’m happy with and grateful for my account.

        Be aware if you transfer a large amount of money into your ABLE account, you will not immediately qualify for SSI. They penalize you with a five year waiting period after moving a large amount. But that may be worth it if you might need in-home caregiving or other Medicaid benefits.

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    2. what about SNAP/foodstamps? if I get my DAC benefits deposited into an able account will that income still count for SNAP? if it doesn’t count then it could be a way to get the max SNAP benefits?

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      1. Depositing your own money into an ABLE account never stops it from counting as income. It will still be income and count for all programs.

        It won’t count as a resource anymore though. If SNAP has a resource limit in your state, then saving money in your ABLE account won’t count towards that.

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  35. Ok so my boyfriend got in trouble as a foster kid, the juvenile court judge arranged for him to become an emancipated minor at age 15 and also got him approved for SSDI under his own SSN under intermidiate explosive Disorder.. – he remembers HA being the code behind his SSN with Medicare once he got Medicare… Well at age 17 he ended up getting incarcerated till he turned 36.. he didn’t get to use the prerelease program as he was in the hole before being released and so noone even advised him of his release approaching. He did try to file upon getting out for adult SSI but it was denied.. since then he has made very little. Somehow he has 15 credits altho he only made $6 k one yr $5k one yr and alittl under $2 k for 2 of those yrs. Before incarcerated he had like 200 one yr and just under 700 for the other..can he get adult child benefits
    His mom is disabled altho he doesn’t live with her right now.

    Like

    1. Hi Shelley,

      I am sorry I don’t know for sure.

      If he is low income and assets, he can apply for SSI right now. It does not matter if he worked. I am not sure why his SSI would have been denied when he was released. It may have been a medical denial if they did not have copies of medical records for him. If this happens again, he can keep appealing and get a lawyer.

      I am not certain if he can apply for adult disabled child benefits. I don’t know if emancipated minor impacts this or not. If he is eligible, then he’d need to prove that he’s been continuously disabled the entire time.

      difference between ssi and ssdi:
      https://howtogeton.wordpress.com/how-to-understand-the-difference-between-ssi-and-ssdi-without-making-your-head-explode/

      Maybe see if there is a SOAR program in his area that can assist? https://howtogeton.wordpress.com/2017/01/20/how-to-get-help-from-the-amazing-soar-program/

      I hope it goes well for him.

      Like

  36. I am on DAC benefits.

    1. If my parents die and leaves me an inheritance, will this cause me to lose DAC benefits?

    2. Can my parents deed a home to me without losing DAC benefits and Medicaid?

    3. Will back payments owed to me cause me to lose Medicaid?

    4. Is it worth it to keep Medicaid so as not to be subject to asset limits? Does this mean more financial freedom such as having more savings without the need for ABLE or Special Needs Trust?

    Like

    1. It would be good to check with a special needs lawyer on these questions.

      In my understanding, nothing you have mentioned above will impact DAC.

      For medicaid:

      Cash inheritance is likely to impact Medicaid, unless put directly into a trust.

      A house will not impact DAC. It will not impact medicaid IF YOU LIVE THERE and it is the only house you own.

      Medicaid rules vary by state. In most states, backpay is excluded for a length of time. Usually 6 months.

      Most medicaid programs have asset limits. There are a few that don’t. Some medicaid programs for working people with disabilities do not have asset limits.

      When looking at asset figures for medicaid, if you see that there is no asset limit in your state, ignore that. Disabled people cannot apply for that form of medicaid 😦

      Like

    2. If you don’t mind another spoonie jumping in to answer some of this. My parents got a disability lawyer and set their will up to make sure what I inherit will be helpful and not harmful to my disability benefits. I recommend that approach.

      The benefit of being on Medicaid is that it covers some things DAC and Medicare do not, most importantly in-home care. For those on Medicare, a caregiver is only covered if you need skilled nursing regularly. If you just need help with cooking, bathing, housework, etc, then Medicaid covers that but Medicare does not. Paying for that out of pocket is more than most DAC benefits can manage. Currently my fiancé on DAC has chosen to move his savings into an ABLE or special trust fund so that in five years he will hopefully qualify for Medicaid and caregiving. (After moving larger amounts of money there is a five-year penalty before you can apply for SSI.)

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  37. I have a question for a friend. She is an adult who has been receiving disability since her pre teens. After her father passed a way she received her child with disability benefits and survivors benefits. Her brother received survivors benefits but recently this stopped due to him reaching 18. Am I entitled to an increase now that my brother aged out?

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    1. I’m sorry that this question got lost and didn’t get a response. How did things turn out for your friend? I believe it was survivors benefit if there are only two people drying off the same income record, there may not be an increase. If there are three people and it goes down to two, then I think it’s more likely to increase.

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  38. Does anyone work as a DAC? From what I try to understand it would be one of the benefits over SSI to be able to work a little more (or have a higher pay per hour atleast). Online says $17,000 or about $1,500 before benefits start to deduct? I’m guessing if one is working and the income is over $2000 a month medicaid goes away. Will there still be any help with medical costs and medications?

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      1. Thanks…I just noticed that page mentions Centers for Independent Living. I’ve been looking into getting in touch with mines since I heard they can be a referral to help with learning to drive, I wasn’t sure what else they do but it sounds like they can help with working and benefits. If I want to drive and have a car I’d need to work plus be able to have money saved for emergencies… it’s hard figuring everything out to get stable and if you are a DAC that probably means a parent or both parents are no longer around.

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  39. The information on being a widow is not quite right, or at least Social Security will allow you to apply as a DAC after a spouse and (both) parents die.

    I don’t quite understand why I was approved back to the date of my father’s death nearly seven years ago though and something about paying the difference minus my SSI – are they serious?!? That’s not a small amount! They said letter to follow, so I guess I wait for a letter now?

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  40. If I understand it correctly, there is a discrepancy between what you write and the referenced DAC article by Thomas Bush. For “High Check” conversions from SSI to SSDI you write that folks are ‘home free’- SSI asset/income tests do not apply. However, Bush seems to suggest that non-SSDI asset and income tests (other than income from SSDI, which is mercifully exempt from affecting Medicaid status) still does apply. Can you clarify? Thanks for this nice review!

    Like

    1. Here’s what it says on the page above. In my understanding, other forms of income or assets can still disqualify the person from Medicaid. Hope this helps:

      “Warning: Watch your assets. If you stay on Medicaid this way, you need to stay under the asset limit. In many states the asset limit for a disabled person is $2,000. They do not count one car, one house, and ordinary household items. One thing that can help with staying under the asset limit is to open an ABLE Account.”

      Like

    2. I’m a disabled adult child I had my 3 year review and I asked the lady if I was able to get married she said no because I’m on dac then she says we can try to switch you to your own record so you can get married is this okay to do I have been on disability all my life my parents signed me up for when I was young way before 18. I’m scared and don’t want to lose benefits my only way to keep a roof over my head.

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      1. Hi Michael,

        Have you worked? If you have not worked, switching to your own record would mean SSI, which may be a lower check and might also go away if you get married.

        Like

        1. Yes I have worked I worked for 2 half years but it made my health problems worse my benefits got suspended because McDonald’s pay me to much I did give them all my paystubs to them

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          1. If you want to look into this more, you could make an appointment at social security and see if they can tell you how much your disability check would be if you switched to your own record. It might wind up being less. I hope it goes well for you.

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  41. I’m confused with medicaid/medicare thing. I just recently switch from SSI to DC benefits. In the letter they say to appeal the decision to continue medicaid, should I do that? It says if it’s not approved I’ll have to pay them back. I haven’t received a letter on backpay yet but from what I understand in the letter it will only go back 4 years and the lawyer will take his amount so I don’t think it will set me over the asset limit. SS already has the $135 deduction every month for part B- so I’m only receiving $160 more than I did on SSI. I live in an expensive state so the whole waiting time I had my hopes up that the extra money would allow me to afford more basic needs, healthier food,clothes,etc. Then I’m reading all the medicare I need to pay which wasn’t mentioned before.

    I feel I’m back where I started but atleast with medicaid I had the dental, eye coverage and everything single thing was covered except for some eye contacts- I never had to pay a penny for doctors or prescriptions. Medicaid also reimbursed $200 for a gym membership. I’ll call my state SHIP but I’m kinda worried now- even paying 20% for doctors and tests will add up. What happens when I’m older than 60-65? Will I be one of those seniors choosing between food and medications? I’m sure SS or my lawyer would of said something that I’d struggle more if I switched over, right?

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  42. I have been looking into things since learning about 1619(b) and Adult Disabled Child benefits. I’m currently on ssi and my dad passed away last year. Is there a time limit to apply for ADC benefits, and how long should it take to be switched over if I call since it didn’t happen automatically?

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  43. Is there any way I can apply for my adult daughter? She moved in with 3 others over a year ago, and she is not fighting for DAC. Then again, she doesn’t comprehend things like the ghosts who haunt her is part of her disease. I originally helped her, but they claimed to be missing paperwork that I personally brought in. However, now that she’s across the country, I do not have the ability to speak for her, according to Social Security. Is there a way I’m unfamiliar with?

    Like

    1. I believe there is a form she can sign that would allow you to be a representative for her and speak on her behalf. If you contact your local social security office, they should be able to provide you with information on this. I hope that it goes well for you.

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  44. Ok so I started to receive SSI $670 a month, in December of 2018, this month. I also applied for Disabled Adult Child Benefits at the same time I applied for SSI. The SSI got approved first so I took it. Mind you, I’ve only been on SSI for 7 days now. I got a letter in the mail stating that I will no longer receive SSI because I was granted DACB at $848 a month starting January 2019. I have not gotten my reward letter yet for this. point being is can I keep my medicaid even though I was only on SSI for one month? I’ve been going through the process of getting a family caregiver with medicaid twice. I really don’t want to go through the process a third time.

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    1. This is an excellent question that I don’t know the answer to. Since you were on SSI, It appears to me that technically you should qualify that way. If for some reason you don’t, your income is low enough that there’s A good chance you’ll qualify for different form of Medicaid, so I strongly suspect it will be possible for you to stay on your Medicaid program one way or another. 🙂

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  45. Great information. My daughter is a DAC. She has medicare and medicaid. Every year she has to renew her medicaid but if i read right she gets it under the loop hole. IF this is correct why does it have to be renewed yearly. Should she call the local office and ask? She lives in Texas.

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    1. I cannot say for sure if it is being done correctly or not. However, even if she is continuing to get Medicaid under the loophole, it is possible they need to check every year to make sure that she doesn’t have any new sources of income and that she hasn’t gone over the asset limit.

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  46. Sleepygirl thank you,

    I will be sharing your websites with many. Your information is amazing and helps to navigate through all the hurdles and loopholes.

    Like

  47. Sleepygirl,

    My SSDI says I am approved disabled as of October 31, 2017. My first SSDI payment benefit was April 2018. We file the DAC paperwork on November 2, 2018

    What date will SSA utilize for our daughters when switching her from SSI to SSDI?

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  48. My SSDI says I am approved disabled as of October 31, 2017. My first SSDI payment benefit was April 2018.

    What date will SSA utilize for our daughters when switching her from SSI to SSDI?

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  49. Thank you for your assistance, I will defiantly show them the policy rules. I believe SSA is worried because they never informed us about her need to transfer to SSDI. We had to inform them and now they are gather all kinds of information doctors list and numbers. From what I read it should be automatic transfer, but they are going to find nothing in her health changed.

    Also thank you for the link about food stamps. I can see its all mater of how you report the expenses.

    Liked by 1 person

    1. If the DAC is higher then the ssi, then she should receive some backpay.

      I can’t see why this would trigger a medical review. Unless it was just a coincidence and she was coming up for review anyway.

      I hope it goes well for your family.

      If the DAC is not higher then the SSI, then she should be able to receive $20 more than maximum SSI as long as she pays her share of the rent.

      Liked by 1 person

      1. It triggered a medical review for me, also. But they had just reviewed my SSDI (it’s lower than SSI, because I was already sick when I was trying to work, so only ever worked part time) within months, so they just checked that it was in the system, and then moved on to asking me when I got disabled.

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  50. Our daughter had a brain tumor at age 9. She qualified for SSI and Medicaid benefits at age 18. I am now receiving SSDI benefits. She now has to go through a qualifying process to switch to SSDI benefits of my work history. Question,
    1, Will our daughter be able to retain the Medicaid or will they take that away?
    2. She also receives SNAP food benefits, will she loose that also?

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      1. No, Medicaid is not. That varies from state to state and you certainly CAN get dropped in the shuffle!! Arkansas dropped me for no reason (I make less than the maximum) AND informed Social Security that they had dropped me after their own date to retain Medicaid during the appeal process…

        Knowing all of your state policies, including appeals, is the best bet for a smooth transition!

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  51. Thank you! I received a letter last week that I am tentatively medically approved for my current SSI application, so I am assuming the if I accept it, I would be UNABLE to try and reopen my previous case, right? Late last week, I tried calling a couple of law firms where I live and either no one is taking social security cases, they’re not taking new clients or they have conflicting information. Unfortunately, I live in a state that seems to have limited resources.

    I did talk to a law firm late this morning, they suggested that I go to a social security office and try to file an Adult Child Benefit application and when it’s denied, I contact them for help. If I do this, would you recommend waiting on accepting my current SSI application? My biggest concern is, is it possible to be declined for Adult Child Benefits if I accept my current SSI application which has an onset date after 22. The law firm that I spoke to this morning said you can qualify for both SSI and Adult Child Benefits, but whichever has more money, you’ll receive. I know my current SSI application says I have 10 days to respond, but I received it a couple days ago.

    Any advice you can offer, I would really appreciate it! Thanks

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  52. Hi, thank you for your very informative website, it is much appreciated. I need some help/advice, please. I was disabled before the age of 22 and I have plenty of medical documentation (binders full)! I originally applied for Social Security (SSI) in my late twenties, but I was so ill that I wasn’t able to complete the process. I am now in my thirties and I’ve been approved for SSI, but I am wondering about the Adult Child Benefits and if I qualify. One parent just retired and is on social security. Is it possible that I could apply for ACB? I was told by an Social Security advocacy office in my state that I would NOT qualify because my parent was not retired, deceased or disabled before I turned 22. I also asked if I could appeal for SSDI, instead of SSI, because of my parent’s work history and me being disabled before the age of 22, but they claimed they didn’t think I could appeal it. Thanks for your assistance and advice!

    Like

    1. Hi Nicole,

      You are definitely eligible – it doesn’t matter if your parents was retired in the past. Its very common for people to be told misinformation about ssa regs.

      The question of whether you can still appeal is one I am not sure about. I have tried looking to see if there is a deadline for appealing an onset date, but have not been able to find a policy on this. How long ago were you approved?

      You may need to get your old case reopened. Was it denied by a judge or earlier in the process? for medical reasons? missed paperwork? something else?

      There is some info on proving an earlier onset date here: Hope this helps
      https://howtogeton.wordpress.com/2017/03/28/how-to-get-around-expired-work-credits/

      Like

      1. I still have my paperwork from when I originally applied in 2010-2011, so my original letter from Social Security has an onset date of 2010. Unfortunately, when I received the letter about moving forward in 2011, I was gravely ill, and in the hospital. I believe that I was medically approved when I first applied because I started receiving letters to chose a medicaid MCO, but I had assets (a life insurance policy) that had a face/cash value over the allowed limit. However, due to my hospitalization and medical condition, I was unable change the type of policy, so I was denied because of my asset amount.

        When I reapplied last year, I again received the letter about moving forward, but the onset date was later and it asked “I was not disabled prior to the age of 22.” I had the advocacy group that I was working with notify Social Security that I was disabled before the age of 22 and the advocacy group supposedly submitted records from my pediatrician’s office and various letters from my doctors. As I said, I have plenty of medical records, but it is trying to figure out how to appeal and go back in time.

        Lastly, if a parent is currently on social security (retirement), is there a way to get SSDI by filing an appeal or are adult child benefits the way to go, if possible? Thanks again!

        Like

        1. I think the first step would be to confirm if you were medically approved the first time.

          It sounds like you were, but if you applied for medicaid, those letters could have been for medicaid not social security.

          If you were already approved last time, you probably shouldn’t have to resubmit medical records, it is more of a technical issue.

          Did you recover and go back to work at any point after age 22?

          The purpose of an appeal would be to change your onset date. You would be appealing the onset date decision and this would automatically make you eligible for adult child benefits.

          You might try making an appointment at your local office to see if they can give you the documents showing whether you were approved the first time and what the onset date was on that approval.

          How long ago was your most recent approval?

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          1. In 2011, when I was medically approved for the first time, I personally did not enroll in medicaid. I am assuming that because I was “tentatively” medically approved for Social Security (SSI), I was automatically enrolled in medicaid by the Social Security representative that was assisting me. However, when I did not complete the process, I received a letter from HSD saying “medicaid benefit termination notice for SSI recipients” and that “the Social Security Administration advised us that your SSI cash payments will stop, this means that your Medicaid benefits as a SSI recipient will stop.”

            I have never recovered. I have multiple genetic disorders, which I was born with and I have dealt with all of my life. I also have other medical conditions that are independent of the genetic disorders. I tried to go back to work (I don’t know the exact year, but it may’ve been in 2010), but I was so ill and I had so many doctor’s appointments that I couldn’t keep a regular work schedule. On my most recent approval, which is from January 2018, it still has the “disability began on date” as 2010, I just noticed that. Perhaps having two approvals with the same “disability began on date” is good for an appeal. Please let me know what you think, I appreciate it. Thank you again!

            Like

                1. Hi Nicole,

                  I’m sorry that I don’t know the details on this kind of appeal. Appealing an onset date is very rare – I’ve never met anyone who has done this.

                  Do you remember when you were working if you earned more than SGA and if you worked for more than six months in a row?

                  SGA chart: https://www.ssa.gov/oact/cola/sga.html

                  Did they set your onset date as the date you stopped working?

                  Like

                  1. Hi, I don’t think I earned more than the SGA and I have never worked more than six months in a row. I believe they set my onset day as the month/year that I stopped working last. It looks like I worked in July 2010 and in the first approval, they set the onset date to August 2010. Thank you

                    Like

                    1. Hi Nicole,

                      Sorry for the delay, I went to ask someone who knows more than me.

                      I do not know these rules well, but it seems like the options are:

                      1. try to get your previous case reopened and then appeal the onset date. This part is a little tricky because you have missed the deadline for an appeal, so you’d need it to be reopened. Info on reopening: https://howtogeton.wordpress.com/how-to-reopen-an-old-claim-social-security-disability/

                      2. You may be able to put in a new application for Adult Child benefits. I am not able to find the reg on this, but I was told it might be possible. You could start a new application and make it clear that you are not applying for SSI or SSDI, you are applying only for Adult Child benefits.

                      I have never met anyone who has done this, so if you try it, I would love to hear how it goes for you.

                      Like

  53. Hi Shannon, unfortunately the special allowance is to keep Medicare and only if a person on Adult Child Benefits marries another person who is also receiving Medicare. Medicaid through SSI is available only for those who receive less than $750 a month and have savings under $2,000. I’m guessing your survivor income bumped you past that, and that’s why you lost Medicaid. I know there are some new rules for health insurance, so it may be worth contacting SS or your local state health insurance to see if there is any way you can either get Medicaid or get help with your Medicare costs.

    Also check into Extra Help. It helps cover copays and has 3 tiers depending on how low your income is. On the tier that gives the most help, it covers all of my copays for doctor and specialist visits, testing (labs and imaging, etc), and covers most of my medication copays (I pay about $1.15 for most of my meds). I also have a low income grant that covers much of my monthly premium pay for a Medicare Advantage Plan.

    For your son (if you are the same Shannon who asked about that), he will likely get the most amount of monthly income if he gets Adult Child Benefits, which is SSDI based on a parent’s work credits. If they are less than he would get on SSI, then he should be able to also get SSI. So getting Adult Child Benefits will definitely not result in him getting less income than for SSI. For example, I am on my own SSDI but I was never healthy enough to work full time, so I only get about $400 from SSDI. SSI fills in the rest to give me up to $730. My fiance is on ACB and gets around $800 from his dad’s SSDI.

    However, one thing to take into account is that SSI does cover a few things that SSDI does not. In-home care is the biggest one. With SSDI you can only get in-home caregiving if you need skilled nursing care. With SSI, however, you can get it if you need help with bathing or dressing. I need help washing my hair and need reminders to take my meds, so I qualify for someone to come in a couple times a week to help with those things as well as shopping, laundry, cooking, and cleaning. I also get free taxi rides to medical appointments and urgent care or ER.

    Good luck navigating all this. So confusing.

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  54. Amy, to add, I started disability payments on my dad’s record before I became eligible for my own (SSDI) based on my work history. I suppose this was SSI on his record before I got my own. This was way back in 1999… And, once I got on my own record, I was ineligible for medicaid. Once Medicaid was expanded, I qualified even on my own record. Again, once I began getting survivors benefits from my dad, I lost medicaid. I guess my question is, can they go back to 1999 for the special rule? Just trying to understand, sorry if this doesn’t make a lot of sense.

    Like

    1. I think it might come down to whether you were ever on SSI.

      1. First time you lost medicaid – I’m not sure you were on SSI. I’m not clear what you were collecting then?

      2. Second time you lost medicaid… Before you got the survivors Do you know if you were on both ssi and ssdi? or just ssdi?

      I wonder if this is something you could look up on your online account? I think the info might be there? not certain.

      Like

  55. Amy, I have a question. I was low income while on SSDI and qualified for medicaid, which was awesome because I never used medicare because it was expensive so, I didn’t go to the doctor…. When I got medicaid, that changed. My father died and I began receiving Survivors benefits. Nice surprise, however, I still haven’t received any letter stating explanation of this new benefit but, I have lost medicaid because of it. Am I eligible for that special rule that allows you to keep medicaid? I’m not sure if your explanation above includes survivors benefits and the special rule. I’d love to have medicaid back!!!

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  56. Hi there! I have a question for you. My son just had his hearing. We don’t yet know the result but I am trying to figure out if he should ask about the Adult Disabled Child benefit, should they approve him. I used to be an ADC on my dad’s record, but because I got SSDI and my own record was more than what I got on my father’s record, I got dropped. – I guess that’s what happened. My father died recently and I now receive Survivors benefits – I guess that’s SSI? Very confusing but a nice unexpected surprise. Anyway, my son doesn’t have much of a work history at all so, I am assuming he won’t get SSDI (under the age of 22 (he’s 20)). – I guess that’s a safe assumption? I guess since I lost the ADC status and got SSDI on my own record, I had enough of a work history which would mean that my son should ask for ADC benefit? What if he’d get more on SSI than he would as an ADC? Will he automatically get whichever is higher? I’m a bit nervous to tell him to ask for that if it would mean he’d get less? Thanks so much for your help because it’s so confusing!

    Like

    1. ideally they will do this automatically, but it’s a good idea to double check. after he gets approved they will contact you for an SSI interview and you can ask then. if the DAC benefits are low, he might still get some SSI as well. there is no way he will get less as long as he is low income enough to qualify for the SSI too. hope it goes great for you.

      Like

  57. Hi, I’m in the process of applying for Disabled Adult child benefits off my deceased fathers account, and I just have a question

    When me and my sister was reviving Survivor benefits we were receiving $1732. $869 each. Now that my sister is off the record. If I get approved for the adult child benefits how much could the benefit be? The $1732, the $869, something less or something more?

    Like

    1. Hi Andy,

      I’m sorry I don’t know the answer to this. The regs for Family Maximum Benefit are so complex.

      I think that the answer might be that if you and your sister were the only people drawing on the account, your amount will stay the same. But if your a mother or someone else is also drawing, then your amount might go up because you were hitting the family maximum benefit and now you won’t be.

      I’m not at all sure what I wrote is correct. If you call Social Security and ask how much your father’s benefit would be (if they can tell you this?) then I believe adult child benefit should be 75% of that number.

      Like

  58. FANTASTIC articles and tips on how to help yourself get approved. The things I’ve read here have helped me sooooo much!!!

    Like

  59. Thanks so much for your helpful blog. I have two questions you may be able to help with. I am disabled and am engaged to a disabled man. I am on SSI and SSDI, and my understanding was that he had SSDI based on his father’s income. BF became disabled, and accepted into the disability program, at age 19 and his father was already retired at the time. Does that mean he most likely actually has Adult Disabled Child Benefits? And if so, does the income of the spouse have any effect on whether he loses that completely? Why wouldn’t he be switched into regular SSI when we get married? We will already barely make it on our two disability incomes, and would be on the streets if he loses his income and health insurance.

    Second question: Do you know if holding out as married would apply if you only hold out socially due to religious reasons? We believe in waiting until after marriage to have sex. When we do marry, we will likely end up having much of our food prepared separately because I have extensive and very limiting food allergies. That’s expensive, so it would make sense for us to keep our food and finances separate and have separate food stamp accounts, pay rent equally, and get seperate SSI based on being single, rather than the lesser couple rate. If legally and financially we are living as single, but have a church wedding and tell our friends we’re married, for religious reasons, do you think SSI would take that as holding out as married? And if so, isn’t that religious discrimination? The only reason we wouldn’t be just living together and not holding out as married would be for religious beliefs.

    Thanks so much for your time!

    Like

    1. Hi Amy,

      Yes, unfortunately, my understanding is that adult disabled child benefits stop completely if the person gets legally married.

      He can apply for SSI after he gets married, but the amount will be low. The rate for a married couple is $1,125 (560 each), and he would get Medicaid, but lose medicare.

      Sadly, I do think that having a wedding ceremony and presenting yourself as married in the community are two factors that SSI would consider if they decide to ask you questions about holding out as married.

      I think you would have a hard time proving religious discrimination on this one – just my opinion, of course.

      Sorry I don’t have better news. SSA makes it really tough for couples 😦

      Like

      1. Thank you. I have found a little more information and discovered there is a caveat that if the adult disabled child marries another adult disabled child and certain other cases, then they do not lose SSDI. So it’s possible that since I’m also disabled, it might be still considered a protected marriage (though it may not, since I am not getting SSDI based on a parent’s credits).

        Like

        1. If this is correct, then it looks like adult child benefits and SSDI would continue. However, your husband’s income could mean that your SSI ends. Also, medicare would continue, but if SSI ends, medicaid might end.

          Like

          1. Oh, thank you for the link! That page had a little more detail than the one I’d found. So yes, it looks like my fiance’s SSDI as well as mine will continue after marraige without trouble. His SSDI is low enough that it won’t affect my SSI hugely, but I think just being married might lessen it a little. Things will be tight but if we can manage housing, then I think we’ll be okay.

            Like

            1. Well, I apologize for giving you the wrong info. I’m glad I learned this rule from you 🙂 I’ve updated the post so others will know.

              Are you sure his income won’t cut off your SSI? That doesn’t make sense to me, because if his SSDI were that low, wouldn’t he be on SSI also?

              I believe the limit for couples is $1,125 per month TOTAL for unearned income.

              For assets it’s 3,000 total. They will count the value a second car, if you each have one.

              If SSI ends, it is possible that medicaid will end. If medicaid ends, but medicare stays, you might get charged $140 per month in medicare premiums, plus steep co-pays on all doctors.

              There might be a way to get back on medicaid or to qualify for a medicare savings program.

              https://howtogeton.wordpress.com/2017/02/01/how-to-escape-medicare-fees/

              For housing, you may be able to get on waiting lists to find something affordable for a couple on disability. I hope it goes great for you.

              https://howtogeton.wordpress.com/a-long-long-long-list-of-places-you-can-call-if-you-are-seeking-affordable-disability-housing/

              Like

              1. Hmm, he doesn’t get much and almost qualifies for SSI but not quite. We do currently get a little over the $1,125 if we were to combine our benefits but by less than my SSI stipend is, I think… If we count only his SSDI and my SSDI then we’re a little under the amount, I think, which should mean I’d still keep SSI and just wouldn’t get much of a monthly stipend? I can’t live without the caregivers I get through Medicaid, not to mention the help with copays and everything. We’re not planning to marry right away, but before we do, we’ll have to meet with someone and make sure we know exactly how everything would change. Thanks much for your help with that.

                How do they expect a couple to actually live on $1,125, much less a single person living on $730 (+plus state stipend)? I’m on waiting lists for a few HUD apartment places but one of my allergies just jumped to being really severe if I even get a whiff of the food cooking, and I’m worried I won’t survive in a tight-packed apartment complex. But in my area you can’t get on the waitlist for Section 8 unless you are homeless and/or disabled and in a program called Health Homes. It took me days of calls before I could find anyone who had even heard of Health Homes and finally figured out you only qualify if you have Molina health care and multiple chronic illnesses and are homebound. I qualify for all except I’m not on Molina, but no one really seems to know anything much less be able to help me figure out that problem. The insurance I do have is the only place that has a program with primary care doctors who make house calls, which I need. So basically I can choose between housing or medical care.

                I’ve looked into moving elsewhere but I have a lot of family and friend support in my area plus the day to day services for disabled people seem to be a little better than some other places (such as house visits by doctors!). I’m already isolated enough and to move away from everyone I was able to connect with before becoming homebound doesn’t seem wise. But my current living situation isn’t ideal for my health, though I’m grateful to have a roof at all.

                Thanks again for all your hard work. I know it’s tough to collect all this info and share it in a comprehensive way, especially with brain fog and PEM.

                Like

                1. Yes, that sounds right to me. If the combined SSDI is under $1,125, you would keep a small amount of SSI plus Medicaid.

                  I didn’t realize you were in California. California adds a state supplement to SSI, so the amount will probably be higher than 1,125 – I am not sure how much the supplement is for a married couple. For single people the supplement is about $150.

                  California also allows spouses to be medicaid caregivers. If your spouse is well enough to care for you, you could hire him if you wanted.

                  That is fantastic that you found home visits from doctors. great work.

                  Also, how wonderful that you found love while homebound.

                  Yes, I am glad you are on some housing lists, but I see the problem.

                  Some HUD properties for elderly/disabled are not buildings, they are row houses or a series of duplexes. Of course, that still gives you some neighbors, just not as many. I don’t know what is in your area. I’m not sure if anything on this list would help:
                  https://howtogeton.wordpress.com/a-long-long-long-list-of-places-you-can-call-if-you-are-seeking-affordable-disability-housing/

                  If you get on Section 8 voucher in another area, then after twelve months, you might be able to transfer it and move back to your current area (it’s called porting), it’s not always possible, so you have to look into it ahead of time, and of course moving would be very hard for you I’m sure, and finding landlords who accept vouchers is not easy either, and if you are looking for a place with no neighbors that is going to be very hard.

                  It’s possible you could request to port immediately as a disability accommodation. I don’t know if they would do it, but it doesn’t hurt to ask.

                  If you can get in off a waiting list for a building that is way way easier.

                  If you have not already done so, make sure to call all buildings marked “senior” some of them will take younger people with disabilities, if you ask.

                  I hope it goes great for you.

                  Like

                  1. I’m in Washington state and my fiance is in Maryland. We plan to settle in WA. (We met through an online support site for chronically ill young adults.) All but four states add a small stipend to SSI. In WA it’s about $45. He isn’t on SSI because he has too many assets–some financial gifts from family members. They are working with a lawyer to put everything into the right kind of trust funds for him so he will eventually eligible for SSI, but of course there is the five-year year penalty after moving money around. He/his parents are having to pay for his caregiving out of pocket right now but really can’t afford that.

                    My mom was my paid caregiver for a while, until her health got too bad also. It’s a great program. I’m really wishing my niece could work for me now, but she’s only 17 and apparently the government won’t pay until she’s 18, and by then she’ll be off to college. I have a really hard time finding people who can cook for my allergy needs and with good hygiene/food handling. But so thankful for the benefit of caregiving.

                    Thanks for the housing tips. I have talked to the senior living places in the area, thanks (though who knows if the people who answer the phone always know what they are talking about). Interesting idea about asking for an accommodation to port immediately. I’ll look into that. Thanks!

                    Like

                    1. I am so happy that you found love.

                      If your fiance has assets, I’m not quite sure how that will impact your SSI and medicaid. Hopefully they can be moved into a trust and that can be settled and figured out before you get married.

                      In some states, they allow you to stay on longterm care medicaid even if your spouse has assets. But if you both need home aides that changes.

                      I believe there is a three year look back on SSI and five year on longterm care medicaid – However I thought that the lookback won’t apply if someone is under age 65 and moves funds into a trust. But I am not certain.

                      It is just so wonderful that you met someone. I hope you can be together soon. It’s sad that there are so many obstacles, but I think you are doing an amazing job researching this ahead.

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                    2. Ah, turns out the New Freedom Waiver that allows in-home caregiving hours to be used for other kinds of care is only in King and Pierce counties (Seattle area) with no plans to spread it to the rest of Washington. I have been asking around, trying to get it down where I am, but the caregiving union is not pleased about it, so I doubt it will happen. Personally I think it would be a good thing for caregivers because it would let them do what they do better rather than being stretched thin trying to do cooking and meal planning with no real training in those areas (they should be required to have food handler’s licences), but they are worried it will take work away from them. But my sister and I have yet to find people who are able to manage raw meat and hand washing hygiene to the level we need in a houseful of people with immune-suppression, much less that and cooking for a huge amount of allergies.

                      Thanks again for all your info and help!

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      2. Hello, I had a question…
        I was 24 years old when I got on General Assistance, while my free lawyer gathered the evidence and court times etc. It took 5 years to be granted onto SSI, I am now 31. I was diagnosed before the age of 22, I was actually 20. My father became disabled 2 1/2 years ago. My middle brother was put on the Disabled Adult benefit at 24 (we were told by a kind person of this benefit), but was previously never even on SSI and went straight to it. My youngest brother had his first episode at 20, 3 months ago. Is there any chance I can still receive this benefit? I’m not sure if I was ever clearly told I was disabled before the age of 22 and at the time I tried really hard to NOT be put on disability. It wasn’t until later, I realized I can’t do this. But I have the exact same problems I had before age of 22 (have the files). I feel I shouldn’t be punished for trying to succeed. Thanks

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        1. The disabled adult children benefit will get divided up among the children. The formula is very complicated, and the amounts may change, however if you were to go on this benefit, there is a chance, that your brothers disability checks would go down, and it is not clear if you are check would go up or not. If I were you I would look into this before making any decisions.

          However, the amount you receive would change when one parent was deceased, and in that situation it might be more likely to go up.

          Do you still have copies of your medical records from when you were younger?

          If you have medical records from before the age of 22 showing that you had a disabling condition at that time, I believe you should be able to put in an application for disabled adult child benefits now. That is my understanding.

          It would be helpful to have record that show the severity of your condition, just having the diagnosis may not be strong enough, or if you are still able to contact any of your doctors from that time, that can also be helpful. I hope it goes well for you.

          You could also check and make sure That you are not already declared disabled before the age of 22. I am not certain how to do that, it would have been written in the award letter that you received. If you do not still have a copy of the letter, you might be able to request a copy, or possibly you could try calling your local Social Security office and see if this is information They can find for you.

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          1. I thought there was a limit of three persons that could draw from one person’s earnings? This might just be something a random SSA employee told me, however, and not something I looked up in the rules books.

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  60. I get adult disabled child benefits on my Dad’s account. When my mom retires in a couple years, hers will be higher. Do you know if I can then switch to her account or would it require reapplying? And thank you very much for the info about Medicaid continuing! Would I also keep getting IHSS as long as I’m getting Medicaid? (And thanks in general for your site—so much helpful info! And I know it must be tiring to keep up with.)

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    1. Hi Katrina,

      To the best of my knowledge: You should be able to just switch to your mom’s benefits. I don’t think this is difficult to do.

      From the rules I have read, as long as you are getting medicaid/mediCal you stay eligible for IHSS as well.

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      1. Hello,
        Our daughter will receive DAC benefits of $1200 when I retire (I’m over 62). I know that she will qualify for Medicare in 2 years time. The goal is to get her off the SSI conditions regarding income and assets. We try to avoid a special needs trust to protect any assets she will inherit. I wonder what can be done to minimize medical payments that will go up with Medicare. I assume she can still keep/qualify for Medicaid but I would like to get this payback provison off the table when she receives an inheritance. I looked at Able finds but they also have a payback provision to the government. So my goal is to make a clean break and not pay large amounts for her health care.

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          1. Thank you sleepygirl,
            I read all the info on your site but could not find a good answer. I wonder if you can recommend where/who to ask about this? I’d like to keep her on medicaid but worry about the asset stuff etc.
            Maybe I should check into the special needs trust a bit more ? But that too seems complex to me. Kudos to your work, we (Nami support group) find your site to be the most informative!

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            1. For an inheritance and special needs trust it’s best to talk to a special needs lawyer who specializes in this.

              The link to the policy on medicaid continuation is on the page above. Many local medicaid programs don’t know the policy, and a lot of readers report needing to fight/advocate/educate their local office so they would apply the policy and keep medicaid.

              hope it goes great 🏵️ 🌼💛 

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              1. Hi Sleepygirl,
                I found something interesting about Able accounts I will pursue:
                Up to $100,000 can be retained in the ABLE account while maintaining SSI eligibility.
                Up to $418,000 can be retained in an ABLE account if SSI is not needed (but Medicaid-eligibility is). Medicaid estate recovery cannot occur on Florida ABLE accounts as of the passing of HB 6047 on June 30, 2019.
                ABLE accounts protect food-stamp and Section 8 eligibility in addition to SSI and Medicaid.
                From this website…
                https://www.elderneedslaw.com/blog/florida-able-accounts-and-special-needs-trusts
                If true this will resolve my issues. No longer on SSI so higher asset limit and one can keep Medicaid. Bingo!!
                Looks like it is a Florida law (HB6047) but if it is universal that might be interesting for others?

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                1. Great research!

                  If you are trying to do extended medicaid contiunation, I would proceed with care.

                  The regulation specifically states that you MUST be SSI eligible in every other way except for the DAC payment.

                  Link is on the page above.

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                  1. Always too good to be true ? I try to figure out if I should go ahead with the DAC benefit (retire) or wait. It is quite confusing to figure out and I try to avoid surprises – that’s why all the questions…
                    I found this on an Able account website…There is no impact on Medicaid benefits, regardless of how much money is in the ABLEnow account. So I still think this should work?
                    Thank you so much for your feedback and quick response. Best wishes to you!

                    Like

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