This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Wednesday, October 8, 2014

SSI for your adult child

What is SSI?

*Supplemental Security Income Program (SSI)*

Supplemental Security Income, or SSI, is a federally funded need-based disability program that pays recipients a set monthly amount. The SSI program makes monthly cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. The Federal Government funds SSI from general tax revenues.

What is SSDI?

Social Security Disability Insurance pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes. To qualify for SSDI you must have Social Security work credits are based on your total yearly wages or self-employment income. You can earn up to four credits each year.

The number of work credits needed for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled. However, younger workers may qualify with fewer credits.

  • Before age 24--You may qualify if you have 6 credits earned in the 3-year period ending when your disability starts.
  • Age 24 to 31--You may qualify if you have credit for working half the time between age 21 and the time you become disabled. For example, if you become disabled at age 27, you would need credit for 3 years of work (12 credits) out of the past 6 years (between ages 21 and 27).

Specifically, if you are a parent who receives Social Security Disability Income (SSDI) because of a disability that prevents you from working or are receiving Social Security after you've retired past the age of 65, your minor child can also receive a monthly cash benefit until the child turns 18.
Adults Disabled Before Age 22

An adult disabled before age 22 may be eligible for "child's benefits" if a parent is deceased or starts receiving retirement or disability benefits. We consider this a "child's" benefit because it is paid on a parent's Social Security earnings record.

The "adult child"—including an adopted child, or, in some cases, a stepchild, grandchild, or stepgrandchild—must be unmarried, age 18 or older, and have a disability that started before age 22.

Children who became disabled prior to the age of twenty-two are eligible to continue to draw SSDI benefits based on their parent’s earnings record. This is usually a higher amount than SSI (your child will receive whichever is higher). So if either parent is retired or on SSDI look into this!

Qualifying for SSI/SSDI
A diagnosis alone does not mean there is a severe disability entitling the applicant to SSDI or SSI benefits.  We have all known people with serious afflictions, such as bipolar disorder, cancer, diabetes, heart disease, chronic fatigue syndrome, multiple sclerosis, HIV and/or a myriad of other severe conditions, who work productively for many years despite their diagnosis/es.

Conversely, someone can have a relatively "mild" disability (like a borderline IQ), that when combined with another diagnosis (like PTSD, Bipolar Disorder, FASD, ASD...), severely negatively impacts their ability to work. 

To be medically eligible for SSI, the applicant must be able to prove a medically determined impairment that severely impacts their ability to work for a minimum of twelve (12) months, and the severity of that disability has to be such that they cannot return to their prior work or any other work that they would be expected to do based on their residual functional capacity. 

This is important to focus on when answering questions. Don't say something like, "I have severe pain and go to the hospital all the time," when describing disabilities. Instead, focus on how it interferes with your daily life and ability to work. 

"Because of daily pain caused by my ________ (disability), I have trouble concentrating to the point that I am often unable to focus on simple tasks like paying our utility bills and have even gotten lost driving to the doctor's office." 
"Medication side effects have caused severe weight gain, which causes terrible joint pain and prevents my standing for long periods of time and I now need to use a walker." 
"My anxiety frequently prevents me from being able to handle going to work (or get out of bed), to the point that I have lost jobs and find it difficult to work enough hours to provide for my needs."

Severe Medical Condition
Impairments considered severe enough to prevent an individual from doing any gainful activity (or in the case of children under age 18 applying for SSI, severe enough to cause marked and severe functional limitations). Most of the listed impairments are permanent or expected to result in death, or the listing includes a specific statement of duration. For all other listings, the evidence must show that the impairment has lasted or is expected to last for a continuous period of at least 12 months. 

Listing of Impairments

The listing is divided into categories for each major body system
Most likely my children qualify under 12.00 Mental Disorders - Adult

The absence of a listing-level impairment does not mean the individual is not disabled. Rather, it merely requires the adjudicator to move on to the next step of the process and apply other rules in order to resolve the issue of disability.
In other words, even if you don't have a disability on this list, you may still qualify.

Compassionate Allowances 
Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security's standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children. The CAL initiative helps us reduce waiting time to reach a disability determination for individuals with the most serious disabilities. 
List of Compassionate Allowances Conditions

Who can apply for SSI?
  • Are age 18 or older;
  • Are not currently receiving benefits on your own Social Security record;
  • Are unable to work because of a medical condition that is expected to last at least 12 months or result in death: and
  • Have not been denied disability benefits in the last 60 days. If your application was recently denied for medical reasons, the Internet Appeal is a starting point to request a review of the medical determination we made.
  • Have a financial need for support.  Disqualifications: if able to work enough for income to exceed $1400 month; receiving an adoption subsidy/ trust fund/ annuity that is more than the subsidy amount (in 2018, $750/ mo); receiving SSDI that is more than the subsidy amount; supported by someone providing all living expenses (if living with parents the SSA might assume the parents are providing 50% of support), including institutions like prison; if have more than $2000 in assets (although there are ways around this)...
You've heard that most people get denied the first time they apply.  We were informed that this was because most people don't PROVE that they (or their child) has a disability.

When Should We Apply?

It takes about 6 months for the person to be approved (or denied!) to be received. Think about starting the process of applying for SSI at least 4 months before the 18th birthday. You don't want to actually apply until age 18. Applying while your child is a minor, means your child will most likely be denied because your minor child's eligibility is based on your income. 

How do we apply?

  • List of your medical conditions
  • Information about Doctors, Healthcare Professionals, Hospitals and Clinics
  • Names, addresses, phone numbers, patient ID numbers, and dates of examinations and treatments
  • Types and dates of medical tests you have had and who sent you for them
  • Names of medications (prescriptions and non-prescriptions), reason for medication, and who prescribed them
  • Other medical records that may be available from vocational rehabilitation services, workers compensation, public welfare, prison or jail, an attorney or lawyer, or another place 

They will not accept copies of your child's psych evals or any report.  They have to confirm it themselves. That's why they want the contact information.

At first glance, this seems easy.  This is the hardest part!!  

The hardest part for me was the Dates - of every diagnosis, every hospitalization, every psych eval, every meeting with a specialist... 

Not to mention the names, addresses, phone numbers of all of these and every doctor, psychiatrist, therapist, agency...  
Even if you document, document, document this is really hard!!

Appointing a Representative
I don’t know how anyone who qualifies for SSI would be able to fill out all these forms. I have a Master’s and am an expert at dealing with insurance and the like, and it was TOUGH for me!

This is what the SS office says:


  •  Complete and file forms;
  •  Gather information and file it with us;
  •  Review your file and understand the law;
  •  Review your file and understand the law;
  •  Get information from us about your claim, including notices and letters, just as you would;
  •  Represent you at informal or formal hearings;
  •  Give us evidence for you; or
  •  Help you with your appeals. (See our Chapter on the APPEALS PROCESS)


You must sign a statement naming (or in other words "appointing") your representative. We have an "Appointment of Representative" form that you can use. You can obtain it online at or call us and ask for Form SSA-1696.

 Your representative does not have to be a lawyer, but he or she must have certain qualifications. For example, attorneys must be licensed and all others must have good character and skills to help you. Also, the representative cannot be someone who is disqualified or suspended from representing individuals before us or is prohibited by law from acting as a representative.

 An appointed representative's duties are different from those of a representative payee's.


If you do not have a representative and we denied your case, we will give you a list of legal referral services, legal service organizations (for example, local bar associations, legal aid societies, legal service corporations, and law schools with legal aid programs), and community organizations in your area that may represent you or help you find a representative at no charge.

The representative you appoint may not charge you a fee that is more than the amount we authorize.


Gather all your documentation, and you're ready to apply!  The Online Application is super easy and you can easily save it to come back later or stop to find some piece of information you didn't know you needed.

What Next?

Interview - If and when the SSA has questions, they will eventually arrange an interview.  You can go in or do this on the phone.  We chose to do this on the phone.  They mostly clarified and asked the same questions that they'd asked in the interview. My daughter gave them permission to speak to me for most of it, although there were a few questions they required her to answer personally.

Verification of records - Each and every medical professional, hospital, agency... that you listed will be contacted and asked to submit a report verifying your claim. If you want to hurry things along, you can give a heads up to these people to expect this request and encourage them to submit the requested reports promptly.

Functional Report 

Besides your application, disability report and medical records, Social Security uses your responses to other questionnaires to determine whether you are disabled within the Social Security’s definition of the term.  The purpose of these questionnaires is to learn what kind of impact your medically determined impairment is actually having on your daily life.

When filling out the reports, think of your worst days, not your best. 

The most used of these questionnaires is the Function Report- SSA 3373.  For many claimants, it is a difficult form.  Why?  It asks broad questions about your life and the response time to answer is short, usually 10 days.   While it is prepared by you, and not a “professional,” it is an important form.

 While your response will likely not “win” your case, it can cause your application to fail.

The functional report is probably the hardest one to fill out because the questions are so subjective and emotional. All the other forms are pretty much fill-in-the-blank with facts.

We're taught to focus on our skills and strengths. This form is saying, "tell us why you're incapable of being self-sufficient and unable to work or contribute." Putting all this negativity down feels like you're calling yourself a failure.

I helped one young adult with multiple disabilities (including Bipolar 1 and Chronic Concussion Syndrome) that didn't end up being awarded SSI. I strongly believe it was because the girl *could* work, *wanted* to work, and was even *capable* of getting work and doing a good job... for a while. Then she would have a flare up, get sick or need surgery, get depressed or anxious to the point that she couldn't get out of bed... and she couldn't work.

This would happen often enough that she wasn't able to keep a job for more than a few months. So she *could* work, but not for 12 months in a row, and she was limited to minimum wage jobs, because of her poor job history.

This means she was eligible to receive SSI, BUT she couldn't admit it without feeling like a failure. She wanted to focus on her strengths and skills, and got very upset, shut down, and overwhelmed at the need for focusing on her limitations.

I wasn't part of helping her filling out the functional report or talking to the SSA worker. I tried to prep her for it though, and help her understand it was OK to talk about the issues that kept her from working and that meant she needed support, but I'm pretty sure she didn't.

Here's a sample of the types of questions and answers on this questionnaires, and the responses that "Kitty" wrote.

Be sure to keep a copy of everything!!  This gives you something to refer to when you're interviewed and also when they claim they never received it (happened to us twice!) you have a copy with the date you sent it.  You might want to take it another step and mail it certified.


             AND WAIT...
                             AND WAIT...

Just when we'd finally decided they were missing some paperwork, or they forgot about us, or she hadn't gotten it...

We got a letter!  Stating that if we didn't contact a certain representative with the SSA with the "needed information" by the deadline (less than 4 weeks away) then our application would be denied.  No mention as to what the "needed information" was.  We called first thing Monday morning.  The message said the representative was in the office but would return our call in 48 hours or more.  

Since Kitty couldn't/ wouldn't talk to them on her own, she had to speak to them to tell them they had permission to speak to me. Which means we were glued together at the hip until they called.  

We waited 4 days and left another message.  No answer.  Called again and again Monday morning, but the phone system wasn't working.  Tried calling the Federal SSA, but spent  2 1/2 hours on hold only to find out we had to talk to our local SSA office.  Called the local SSA using a different number than the one we had for the representative, and discovered it was broken too.  We went in person to the local SSA office.  Waited in the lobby for over an hour, only to be told he'd already left for the day. (They close at 3pm and it was only 1pm!).

2 more days and he finally called to make an appointment.  It, of course, was Friday so it had to be the following week.  We were told to bring in copies of Kitty's pay stubs, and that was it.  When we arrived for our appointment (waited almost an hour in the lobby), we were told she had been awarded SSI and needed to sign a piece of paper stating I was being appointed Representative Payee.  

It wasn't until later that I realized we'd spent so much time ordering a new Social Security card (Biomom hasn't returned Kitty's card after repeated requests) and discussing SSDI for when Hubby and I retired or passed away, that I realized I hadn't asked important questions like... when do the payments start and when does her Medicaid start?

Denied for SSDI - When you apply for SSI, technically you are also applying for SSDI. Don't freak out when your child is denied for SSDI! This simply means your child does not have enough work credits. This has nothing to do with eligibility for SSI.

How Does the Money Part Work?

The SSI disability benefit provided by the federal government is the same in all states. However, in most states, SSI recipients receive an additional supplementary payment from their state, giving them a monthly benefit amount that's higher than the federal amount ($721 in 2014).

Representative Payee
If you are the Representative Payee, you will have to open a special Rep Payee account using the SSI benefit check. This is technically in both your and your child's name, but your child will not have access to it. You use this account to pay for your child's expenses like rent, food, living expenses. For me, it helped a lot to use an Excel spreadsheet to track where this money goes. (Don't let this account accrue more than $2K!)

Backpay. Benefits start from the first of the month following submission of the application. Since Kitty applied mid-April and was not awarded SSI until early October, that means Kitty will have about 5 months of "backpay."  How we're handling that is a post for another day, (basically she will use most of it to "pay back" her living expenses while she waited).

Getting the actual monthly check can apparently take quite a while.  We got the "backpay" pretty quickly. She was awarded SSI the beginning of October.  We still haven't received the monthly check. It's supposed to be direct deposit, but we can't figure out to whom we need to give the bank information. The last person we spoke to has not returned my calls - possibly because the call needs to be generated by my child.

Update: I finally got time to actually go in and talk to someone at the Social Security office. It turns out that since I hadn't signed up for direct deposit the money went on a Direct Express card which works like a debit card. This card can be used to pay for things directly, or the money can be transferred into the rep payee account. For some reason, we never received her Direct Express card in the mail (nor did we know to look for it), so she has 5 months of deposits on the card. I ordered a new card and it will take 7 to 10 business days.

Direct Deposit. I got the direct deposit form at the SSA office and took it straight to the bank. It is now in place, but it took a week so the most recent benefit payment also went on her card. Unfortunately, this means that because she didn't (couldn't!) spend the money on her Direct Express card when it finally comes in she will have a little more than $2000 in her account. The guy at the SSA office thinks this may not be a problem since we can prove she didn't have access to the account so she couldn't have spent it, but... 

Anyway, I'll be pulling out $2000 immediately to pay back her living expenses, so hopefully, that will be an ignorable blip.  What's left will go toward her spending money and bank fees.
Update: No one gave us any problem about there being more than $2K in the account briefly.

What if my child can't handle money?

A Representative Payee is recognized and established by the Federal Government to give a person the right to assist a person with a disability with managing their money to pay for their living expenses. No guardianship is needed for this, but it can be an alternative to guardianship under federal law.

You open a Rep Payee account with the first SSI check, which will be mailed to you (our "backpay" check got here first. The account is in the child's name.  You will only be a "financial agent" on the account. Don't worry, the banks know how to do this.

Once you open the account, do not make any deposits into it. The only money that can go into it is from Social Security. Social Security can make automatic deposits into the account.

Kitty lives at home so her rent and living expenses are generally paid directly to us and I transfer it into our account, but when she lives elsewhere, it's often easiest to pay these expenses straight from the Rep Payee account. Personally, I track this on an Excel Spreadsheet.

Kitty's SSI payment is automatically deposited into the Rep Payee account and then I have a direct deposit draft of $15/week as her "Weekly Allotment" into her regular checking account to which she and I both have access.  Currently, the plan is that except for the Weekly Allotment and bank fees all of the rest of the money in her Rep.Payee account will be used to pay her living expenses. ("Living expenses" are food and housing, and or other expenses like clothing etc. which are reported annually). The report does not request or require receipts for reporting. It is a very simple form.  

Weekly Allotment: Kitty has extreme difficulty handling money. For now, Kitty will receive $15 each week, until she shows she's ready to handle larger amounts at once.  One way for her to demonstrate that she's ready will be to show that she can save up her weekly money for something or at least not spend it all within 24 hours!

How is the monthly benefit amount determined?

There are different ways it is determined how much is received:

  • If the applicant is a minor then the amount received depends on the parent's income. Unless the parent is well below poverty level, then SSI is usually denied.
  • If an adult has worked more than a certain length of time, then they would receive SSDI which is based on a percentage of their income when they worked.
  • If an applicant is eligible for SSI and one of the applicant's parents receives (or later starts to receive) SSDI (ex. retires or develops a disability) then the adult child gets a percentage of what the parent makes or the SSI amount - whichever is larger.
  • If the applicant or receiver of SSI lives in the household of someone else (including with his/ her parents), then if that person is providing support, the base SSI payment is reduced by one-third. Support is any food or shelter that is given to someone or paid for by someone else. In 2018, this amount is $500/mo. 
  • If the applicant or receiver is being supported completely by someone else (for example in jail for longer than full calendar month) then they will no longer receive SSI - and will have to reapply if circumstances change.
  • If an adult has never worked or hasn't worked long enough to qualify for SSDI, then they would receive SSI. The actual benefit amount fluctuates a little from year to year, but in 2018, the amount is $750/month. 
The maximum benefit amount is only $750 (in 2018).

That's an annual income of only $9,000. The 2017 poverty guidelines for a single person household is $12,060.

If a Parent Receives SSDI (due to disability or retirement)
When a parent retires or becomes disabled and receives SSDI, the benefits for a child who receives SSI is 1/2 of the parent's benefit. If the parent dies the child receives 3/4 of the benefits. 

If the child's SSI benefit amount is larger than the 1/2 of the parent's amount, then the child would receive whichever is higher. This is an "either/ or" situation - the child would not receive both benefit amounts.

Ex. If the parent receives $1200 in SSDI then the child would receive the regular SSI benefits ($750) instead of 1/2 of parent's benefits ($600). However, if the parent passes away, the child would receive 3/4 of the parent's monthly SSI benefit ($900).

Getting Benefits for a Child Living At Home

We recently got our daughter’s SSI benefit upped from the $500/mo to $750. My understanding is that it has nothing to do with how much rent she pays (I‘ve never charged her more than  $300, plus a little over $100 in living expenses), instead, it has to do with her “fair share” of the (household living expenses). 

Fair Share

Fair Share Worksheet 
  1. Rent or mortgage payment (including any amount for insurance that is part of the mortgage payment and required by the mortgager) $________ 
  2. Property taxes (if not already included in the mortgage) $________ 
  3. Electricity (monthly average) $________ 
  4. Gas (monthly average) $________ 
  5. Any other heating fuel (monthly average for coal, oil, propane, wood, etc.) $________ 
  6. Water (monthly average) $________ 
  7. Sewer cost (if any and if not included in water bill) $________ 
  8. Garbage removal cost (if any) $________ 
  9. Food (do not include soap, paper products, personal/hygiene articles, etc.) $________
Monthly Total $________ 
Divide monthly total $_________ by # of people in household 
 = $ _________ your “fair share” amount.  

Basically, they add up your mortgage or rent (if you have one), property taxes (if you have them), utilities (electric, gas, water, sewage, trash collection – but NOT phone, even if it is a landline, or cable), and groceries (not consumables like paper towels and not fast or restaurant food) --- then they divide that amount by the number of people living in the home (which includes dependent children – even if they are off at college – as long as they still use your home as their permanent address). 

If their "Fair Share" is more than the $750 (2018, monthly benefit amount), then you are considered to be supporting them for the rest (whether you are or not). SSA automatically reduces the benefit amount by 1/3 (which is where they get the $500). 
Ex. Our old house was much bigger so our mortgage and utilities were higher. It didn’t matter what we were charging her in rent. The Fair Share amount was all they looked at. When we moved and no longer were paying a mortgage, her “Fair Share” came to well below $750. We only had to note that we were charging her rent, but they didn’t even care about the rental agreement (I brought it with me anyway). 

Report changes immediately (preferably go into the SSA office!). We told SSA about our new address, but they did not increase monthly benefits until we specifically asked for it!

Other Benefits
Because a person receiving SSI/ SSDI benefits is basically at poverty-level they are usually eligible for other benefits like WIC/ Food Stamps. 

What if My Child is Still In School?
Can your child apply for SSI while still in school? Yes, but be sure to put this fact on the application and bring it up at the interview. This applies to applicants between ages 18 and 22 who are regularly attending school.

How can I save more than $2000 for my child's present and future and keep him eligible for Medicaid-based services? 

Independent and Pooled Special Needs Trust Through ARC it only costs $600 to establish a master pool trust which is established to work with Medicaid (other trusts may not work with Medicaid).

Special Needs Trust Ask an estate planning professional or attorney about setting up a Special Needs Trust, which enables you to save more than $2000 but not in your child's name. 

Able Act The 529A ABLE Act establishes a way to save more money in a person's name while remaining eligible for public funding. The federal ABLE Act, passed in 2014, made way for new state programs—modeled after 529 savings plans—that let those with disabilities, and their families, put aside up to $14,000 a year to be used for a wide variety of disability-related costs, including living expenses. Any individual who is blind or diagnosed with a disability before age 26 and getting benefits through the Social Security disability program is automatically eligible.

Reporting Changes
**Tip** Heads up. You can call in, but the hold time is usually much more than 1 hour, and it does NO GOOD at all. That info is not technically relayed to the SSA office (they have a record that you called in, but the changes probably won't actually be implemented). You have to go in to the SSA office. Make an appointment or just go in, but don’t bother calling. Ask me how I know this.

What Situation Changes Do I Need to Report?
Contact your local Social Security office to report (this can be done online, but you might want to go into the local office anyway to confirm it):
  • You start or stop work, your wages increase or decrease.
  • Your bank account balance goes over $2,000. {You cannot accrue more than $2,000 in assets or you will lose SSI/ Medicaid.  Therefore, if something happens to Hubby and me (we're planning on setting up a special needs trust to prevent this), someone names her as a beneficiary in their will, she wins the lottery, she's given something of value, she has savings of any kind (except for some very specific exceptions)... she will lose her SSI/ Medicaid.  Since at this point her medications alone cost about $2,000/ mo.  She NEEDS Medicaid!!}
  • You move;
  • Anyone else moves into or out of your household;
  • Someone in your household dies;
  • You marry, separate, or divorce;
  • Income or resources change for you or members of your household;
  • Your medical condition improves;
  • You stop or start attending school regularly;
  • You leave the US and plan to be gone for 30 days;
  • You are in a hospital, jail, or other institution for a full calendar month {This is why Bear is not eligible for SSI at this time - he is being fully "supported" by an institution (prison). We will start the application process for him when we have a release date and hopefully, it will start soon after his release};
  • A felony warrant for flight or escape or a warrant for violating a condition of parole or probation is issued for your arrest.

How does Medicaid work?

Medicaid is health insurance. Normally it is needs-based, usually meaning you have to be at or below poverty level to receive it. However, Medicaid comes automatically with SSI. 

Different Types of Medicaid

There are different types of Medicaid, including traditional and managed care options (STAR+PLUS). Every state has their own Medicaid system so if you move out of state, you have to transfer your Medicaid to the new state. Even if you move from one county to another, you will have to let Medicaid know so they can transfer you. 

In recent years, Texas Medicaid (and maybe other states?) has privatized, so our daughter technically has Amerigroup health insurance. Like United Healthcare (another option), Aetna, Humana... benefits are usually available nationwide (for example, if you're visiting family in another state and get an ear infection, then you can go to a nearby medical provider that will most likely be in network); however, we learned the hard way that no matter what the private insurance's policies are for other members - they will only pay benefits as though you still had the state's Medicaid (meaning if you get that ear infection, you're paying out of pocket, because state Medicaid is only accessible within your state!!). 

Adult Medicaid is different from child Medicaid. For example, it doesn't cover dental after the age of 21.

Getting Medicaid

We applied for Medicaid for Kitty the minute she turned 19 so she would have continuous health insurance while we waited to find out if she would get SSI.  She was turned down.  They don't ask all the questions to determine disability that SSI does, so I can only assume they determined she was ineligible based on... I have no idea. Maybe her lack of proven disability? Luckily, we still had Kitty on our private insurance so we only had to pay the co-pays for her medications while we waited for her to be awarded SSI (unfortunately co-pays were about $200/mo).

Medicaid starts the instant your child is awarded SSI.  You can then contact Medicaid directly and get information about your case. Just dial 211.  For Texas, you can also go online at

Warning:  We've had a really tough time with this website and they don't do any tech support for it (when I mentioned a problem we were having accessing it to the lady at 211, she said that the website was for people who "understood computers".  I am very tech capable.  There is a glitch in the system that has nothing to do with my technical capability!  <-- a="" i="" little="" me="" obviously="" off="" this="" ticked="">

Medicaid ID Card

I assumed they would mail my child a card for Medicaid, but I discovered that once you have a Medicaid number it is yours for life (like your Social Security #), so we could have started using her old card the minute her SSI was awarded - and therefore would not have had to pay co-pays on her last month's prescriptions.  In fact, they will not mail us a new card, so I better go find the old one!

Changes in SSI Status

Because you receive your Medicaid through SSI - you don't need to renew it annually like you normally would; however, if you lose SSI, you lose your Medicaid, and you will have to reapply.

Let me say that again. If you lose your SSI, you lose your Medicaid! 

When our daughter moved, SSI got all confused and kept sending us letters saying she would no longer get SSI benefits after such and such date. We would fix that with the SSA, but the information did not automatically get reported to Medicaid! We usually had to verify the information with them as well. 

Getting Medicaid Started
Administered by Social Security 
Most states automatically grant Medicaid when you get approved for SSI based on disability. The Social Security Administration handles Medicaid enrollment for SSI recipients when they are approved for SSI. 

Alabama, Arizona, Arkansas, California, Colorado, Delaware, District of Columbia, Florida, Georgia, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Mississippi, Montana, New Jersey, New Mexico, New York, North Carolina, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Vermont, Washington, West Virginia, Wisconsin, and Wyoming.

Administered by the State
A few states use the same income, resource, and disability criteria that Social Security uses for the SSI program, but require you to file a separate Medicaid application.
Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands.

States With Their Own Medicaid Eligibility Criteria
Some states use more restrictive eligibility criteria for Medicaid than SSI's. In most of those states. The federal government does limit how restrictive the states can be when screening SSI recipients for Medicaid eligibility.
Social Security calls these the “209(b) states.” Section 209(b) of the Social Security Amendments of 1972 gave states the option to use their own criteria for Medicaid. (Indiana ceased being a 209(b) state in 2014). 
Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia. 

Moving from SSI to SSDI
There are ways to keep Medicaid if you move from SSI to SSDI but you must fall into a certain category. (and a new Medicaid application is usually required). After 24 months, you will most likely need to switch to Medicare. I won't even pretend to know how all that works, so I highly recommend doing your own research.

What is HIPP?

HIPP is the Texas Health Insurance Premium Payment (HIPP) program. HIPP helps pay your whole family's health insurance payments as long as it is cheaper for them to pay your insurance premiums than to be responsible for your child's entire medical bills. 

Ex. Without insurance, Kitty's medications alone cost about $2000/ mo. Our private insurance ends up covering about $1800 of that. If we didn't have private insurance, Medicaid would be paying all $2000. If our monthly premium for health insurance for the entire family is $750, then Medicaid is saving at least $1050 by paying our premium. 

We have always had Kitty covered under both our private insurance and Medicaid because there are a lot of things Texas Medicaid doesn't cover (residential treatment, dental, testing and evaluations, certain types of therapies...).  

Private insurance is always listed as Primary and Medicaid listed as Secondary.  This means that our private insurance covers the bills, except for the deductible and co-pays - which are picked up by Medicaid.  From the private insurance's point of view, WE were paying the co-pays, which went toward our deductible. Toward the end of the year, (sometimes faster if Kitty was in and out of psych hospitals a lot) our family deductible would be paid and the whole family would benefit. We could also afford to get Kitty some extra services that Medicaid didn't cover.

So, in my "spare time," I'll be applying for this using this form. Every month, we'll have to submit Hubby's paycheck showing that he paid the monthly insurance premium. 

What If My Child Works?

Ticket to Work supports career development for Social Security beneficiaries age 18 through 64 who want to work. The Ticket program is free and voluntary. The Ticket program and Work Incentives allow you to keep your benefits while you explore employment, receive vocational rehabilitation services and gain work experience. Your cash benefits and Medicaid or Medicare often continue throughout your transition to work, and there are protections in place to help you return to benefits if you find you are unable to continue working due to your disability.

If you use an employment network or State vocational rehabilitation agency to get a job through this program, then you will need to report your earnings/ wages to it AND to Social Security,

How Does the Money Work?
If you work, even part-time, then the SSI benefit amount would be reduced by a percentage of your earned income.  For more details go

Obviously, if you earn "too much" money (about $1400/mo) then you lose your benefits entirely, but they prefer that you work, so there are some incentives.  Including, they don't count some work expenses (such as uniforms, special equipment that helps you work, and transportation to and from work).

SSA uses only gross wages (hours worked x hourly wage) - the actual amount on the paycheck does not matter to them. 

2 Month Delay
You need to report your wages every month (by the 6th day of the following month). Income you received 2 months prior affects your payment amounts. If you stop working or start earning less, you need to tell the Social Security Office ASAP so they can increase your SSI payments (or start SSI and Medicaid again if they have stopped).


Kitty worked part-time at a minimum wage job evenings and weekends. She applied for SSI benefits in April and was awarded it in May. She increased her hours a little when she graduated in June, but then quit when she briefly moved to Nebraska at the beginning of July. 

For the months of  May and June, she made about $700/mo at her job - this is a Gross amount (vs Net) so it is number of hours worked multiplied by amount paid (in her case, minimum wage). 

In May 2014, Kitty earned $707.91 at her job. (~98 hours at $7.25)

-  20.00 (by law $20 of wages is not counted)
-  65.00 (by law $65 of wages is not counted)
-311.46 (by law they don't count 1/2 this amount - 1/2 of $622.91= $311.46)
+ 237.93 (value of food and shelter - SSA reduces Kitty's Maximum Benefit by 1/3 because they assume we supplement Kitty's living expenses)
$549.38 Total Income counted.

$721.00 Maximum Benefit Amount

-549.38  Total income counted
$171.62 Total Monthly SSI Payment 

In May and June, Kitty will receive her usual $483. Even though Kitty didn't work in July - her SSI payment for that month was based on the income she received in MAY.
Even though Kitty didn't work in August - her SSI payment was based on the income she received in JUNE.
In September, her benefits will go back to $483.

Reporting Wages

Report monthly wages during the first 6 days of the following month. To report earnings you have 3 choices. I highly recommend the app (even though I'm not normally an app person).

1. Telephone Wage Reporting You can call it in (866) 772-0953 or use the app. We called it in and were told that we also needed to mail in the pay stubs. This may be because she only held the jobs for less than a week each so there was no point in setting up the app. They recommend you call by the 6th of the month, but you can call at any time after the end of the month you are reporting.

2. Download an app (SSI Mobile Wage Reporting Smartphone App). You report the monthly number of hours times the rate they’re paid. For example, my daughter worked 100 hrs at the rate of $6.50/hr so I would report her income as $650. I don’t know if you have to be your child’s Rep Payee (I am), but I do know you enter your own SSI number and info and then tell it you're reporting the wage info for someone else (and give his/ her SSN# at that point). I guess if you’re not your child’s Rep Payee, then your child could technically report his own wages. 

3. Report by mail. The other option is mailing in a copy of the paystubs for every month by the 6th of the following month to your local Social Security office. Include the wage earner's social security number.

4. Report Online. You have the option to report wages online, but only if the child has SSDI (not SSI).


  • The Social Security number of the person who is making the wage report (YOU if you're the Rep Payee);
  • The Social Security number of the wage earner;
  • The TOTAL monthly amount of gross wages for the wage earner. Gross wages are the amount of pay before taxes and other deductions (hours worked x hourly wage);
  • The caller’s or mobile device user’s name as it appears on their Social Security card.

What specific earnings information do I have to report?
  • monthly gross wages (that is the amount before taxes or other deductions are subtracted);
  • if you start or stop working;
  • increases or decreases in your wages or self–employment income;
  • if you start or stop a second or third job;
  • work expenses related to your disability; and
  • if you are blind, any work expenses.

What earnings information does Social Security need to see?

  • every pay stub, including pay stubs for overtime, vacations, and bonuses;
  • if self–employed, copies of your Federal Income Tax Forms Schedule SE, Schedule C, Schedule C–EZ, or Schedule F;
  • receipts for work expenses related to your disability;
  • if you are blind, receipts for any work expense; and
  • receipts for expenses paid to reach your Plan to Achieve Self–Support(PASS) employment goal.

Additional Post about SSI
Marriage and SSI Benefits


Leslie said...

Are you sure the joint account is legal? As Rep. payee, you can handle all the funds, but I think the account has to be actually in her name.
Don't mix money in the account.
Do be ready to give a basic break-down every 12 months for how the money was spent. (I think the categories are "food and board" "other" and "saved")

marythemom said...

The bank said it was possible to have a Rep Payee account, but we couldn't sign up for that until we got SSI. This account was her high school account, hers, but with our names on it.

All I can say is that they knew we had the account with both our names on it. Right now my plan is to pull everything immediately, just leaving her weekly allotment and the money needed for bank fees.

I will continue to maintain her spreadsheet.

Leslie said...

No! Not true.
1. Set up the account after you get the first SSI check.
2. You *cannot* have your name on the account. I checked.
From:, page 13:
"To protect the beneficiary’s funds, the checking or
savings accounts title must reflect the beneficiary’s
ownership of the funds and your relationship as a
fiduciary (financial agent). Neither the representative
payee nor any other third party can have ownership
interest in the account. "

Sue Burek said...

My daughter set up a checking account when she was a minor. Minors are required to add an adult with signature power onto the account, so she gave me signature power (both of our names appear on the account). She had the right to remove my signature power when she turned 18, but she hasn't done so yet. When she was approved for SSI, she applied under her own name, and I assisted as her temporary rep to help with the application, but she didn't appoint me as her Representative Payee, and I don't have guardianship. SSI allowed her to use her established checking account, and I still had signature power on it. I never deposit my funds into the account, and she doesn't have signature power on any of my accounts. She writes checks or uses her debit card to pay for rent, 1/2 utilities, food, and other items that she wants or needs. Having signature power on her account was NEVER a problem for SSI. She gets SSDI now, and the joint bank account is not a problem for SSDI.

marythemom said...

I am her Rep Payee (appointed by SSA because it was deemed she needed one - my daughter didn't have a choice) but, like you, I don't have legal guardianship. We use a Rep Payee account for her SSI Benefits (ONLY funds from SSI benefits are allowed in this account). She does not have access to this account.

When the SSI benefit money comes into the Rep Payee account, I can transfer the money where it needs to go (her checking account, another account, directly to the rental agency...). I too have signature power on Kitty's checking account (established when she was a minor).

Now that she's a little better able to handle money (to some extent!), I transfer almost all of her benefits in the Rep Payee account into her checking account and she uses her debit card to pay for rent, food, and whatever. Since there is barely enough to cover her bills, almost all of which are due at the first of the month, I haven't had to worry much about her blowing all of her money before paying her bills.

I know her tendency to spend all of her money and her inability to save is still an issue because when she received her Covid-19 stimulus money, she blew it all on frivolous stuff (mostly gifts) within a week.