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!

Tuesday, October 14, 2025

Fight/ Flight/ Freeze/ Fawn



 



Fight/ Flight/ Freeze/ Fawn - A child who is Dysregulated and/or in fight/ flight/ freeze/ fawn mode is “thinking” with the reptilian part of the brain (survival!).  In other words, they are not thinking at all.

Their behavior is a purely instinctual response to what the brain believes is a life or death situation.

The rational part of the brain just isn't online.  Their eyes frequently glaze over, they are out of control, and it is like the child isn't "home."  Afterward, they do not remember what happened just before or during an episode.  Holding a child responsible for what happens when in a true fight/ flight/ freeze is pointless- it’s better to just move on after it's over and try to figure out what triggered it so you can avoid it in the future.


If your Neurodivergent Child is having a meltdown....
it's important to recognize that 
THIS IS NOT A TEACHING MOMENT.
______________________________
Why do I say that? 
Because during a meltdown, there are physiological changes occurring inside your child that make it IMPOSSIBLE for them to process relevant information and apply it to the situation. 
______________________________
What changes?
Cortisol levels are spiking, leading to faster breathing and a racing heart, 
     making them feel 
    sweaty and nauseous. 
Cortisol flooding makes your child intensely SENSITIVE to sensory stimuli, 
    which increases the chances 
      of SENSORY OVERLOAD. 
___________________
This also amplifies anxiety and fear responses in the brain....
AND causes mental fog
(which makes it difficult to think clearly and almost impossible to remember things).
____________
In addition, your child's pre-frontal cortex (which processes information and retains it for learning) goes OFFLINE... 
    leaving information to be processed by the Amygdala and Limbic system.
Those parts of the brain deal with:
Fight, Flight, Freeze, and Fawn responses....
     And emotions like 
         Rage, 
          Fear, 
       and Aggression.
So THAT, is what your child has left, to work with.
_____________________________
In cases like that, it's NORMAL for a child experiencing a meltdown,
     to exhibit
  "PROBLEMATIC" behaviors,
like yelling, kicking, 
    hissing, biting, 
    growling, hitting, 
insulting and swearing at others,
throwing or destroying things, 
refusing to leave their current location, 
refusing to accept help,
running towards a location that feels safer,
and acting like
  THEY DON'T UNDERSTAND
        OR EVEN TRUST 
           FAMILIAR CAREGIVERS. 
It's normal because their "Thinking Brain" is OFFLINE, and their "Survival Brain" is running the show.
___________________________
So WHAT CAN YOU DO when they are having a meltdown?
      1) STAY SAFE
Use your body to BLOCK them from SEEING people and things they might lash out at.
Hold a cushion, purse, or book in front of your body to shield yourself. 
Direct or lead your child to an area with fewer items they can hurt themselves/others with.... or remove heavy/sharp items which could be thrown.
_________________________
          2) STAY CALM
Fake it, if you need to... 
But keep
       a level voice, 
    NEUTRAL facial expression,
    calm/receptive body language.
Listen... 
    repeat their words back to them, occasionally. ("Yes. The loud noise scared you." and "It felt unfair.")
 But mostly just LISTEN and be a SOOTHING presence.
DON'T cross your arms, 
       furrow your brow,
        glare, 
      scowl,
   or tighten your fists.
Just let your child's meltdown HAPPEN and don't try to fight against it. 
It's as natural as a baby crying when they don't yet have the skils to communicate.
Recognize that it's TEMPORARY and will PASS quicker if you show them what CALM LOOKS LIKE.
__________________________
  3) DON'T TAKE IT PERSONALLY
They are quite literally, "not in their right mind." 
Try to ignore insults and verbal attacks.
Punishing these is like punishing an injured kitten from clawing someone who tries to pick it up--
   punishing biological instincts will just further dysregulate a panicked child....
    and will do nothing to heal the hurt that is making them to lash out, in the first place!
Don't punish now. 
Don't punish later.
Meltdowns are biological responses to trauma and pain.
Meltdowns NOT moral failings.
______________________________
      And when it's over
  4) PICK UP AND MOVE ON 
When the meltdown is over and cortisol DROPS,   
         breathing slows,
the heart returns to a steady beat.
      and muscles relax, 
  WHICH IS GOOD.
But your child may feel like they just finished a marathon. 
They will be looking to you, to CO-REGULATE with them, 
   showing them how to 
   CALMLY MOVE FORWARD.
Moving forward might look like this:
Child:
    I hated how that felt and I was mad at him so I yelled. And now I am thirsty....
      and I think that we should have juice next time when I get thirsty.
Parent:
      I like the idea of bringing juice boxes with us. There is a juice box in the car. Should we go get it, together?
Child:
     Yeah and I wanna take off my shoes.
Parent:
    Okay. We will go to the car, get juice, and take off your shoes. Let's go.
Child:
     Yeah. My feet hurt. 
Parent:
     We can try to fix that problem, together. Let's get to the car and have our juice. Okay?
Child:
    Okay.
_____________________________
      OPTIONAL STEP
  5) PRACTICING FOR NEXT TIME
If you think your child is likely to encounter a very similar situation in the future, then later that night or the NEXT day....
  You can talk calmly through some coping strategies, and practice them. 
It's important to AVOID SHAMING your child.
And its REALLY important to practice when they are calm and feel SAFE.
Keep it simple.
              For instance:
Mom:
    Since the music was so loud at the baseball stadium, I think we should bring along headphones, next time.
Eleanor:
       Okay.
Mom:
      Let's make a sensory kit, together. We can pack up headphones, fidget toys, an aromatherapy locket, a juice box, and one of your beanbag animals. Which animal would you like to pack into the bag?
Eleanor:
    I like the hedgehog. He feels heavy and I like to carry him around when I get nervous.
Mom:
    Excellent idea. So hedgehog will be in our sensory bag and we can practice using the sensory bag when we go to the grocery store, later today.
Eleanor:
     Can I bring my enormous blue marble, too? I like to roll it across my forehead.
Mom:
    Of course. Anything else?
Eleanor:
    My dark sunglasses. 
Mom:
     Perfect choice. Thanks kiddo.
Eleanor:
    You're welcome.
Mom:
   We'll just keep working together. I love you, just the way you are.
Eleanor:
    Love you. Sorry I was grumpy, yesterday.
Mom:
    Everyone gets grumpy sometimes. But we keep moving forward. 
________________________
Which is these steps is hardest for you?
Learning to actually STAY CALM was very hard for me, but now I'm a pro!

Hypervigilance/ Living in a Warzone
Kids of trauma are often easily triggered, extremely sensitive to emotions, unable to regulate their emotions... causing them to react as if they are in a warzone.  You can't learn and attach if you don't feel safe and you're living in a war zone!  Hypervigilance (obsessively monitoring their environment) is super common among kids with PTSD.  It relaxes when they start to feel safe, but probably doesn’t ever really go away.

How we handled it: 

Why Doesn't My Child Feel Safe?



Meltdowns
A “Meltdown” is different from being in Fight mode (which usually looks more like a Rage).  During a meltdown, the child has some control over how far things go. It is still possible to "reach" the child and de-escalate the situation and calm him/her down.

Our bodies' nervous system is very basic - it doesn't know the difference between say, excitement and anxiety. Medications, calming techniques, and maturity can help the body stay calm and keep from sending "AiieeeAiieeeAiiee!!" signals to the brain stem. Bear tends to go into "Fight mode" when he's upset, worried, anxious, afraid...  Whereas Kitty tends toward "flight" or "freeze" and she dissociates (distracts herself).

Polyvagal Chart - Adapted by Ruby Jo Walker, LCSW from Cheryl Sanders, Anthony "Twig" Wheeler, and Steven Porges.
http://www.rubyjowalker.com/PVchart6HD.jpg

It is important to remember that a child in a fight/ flight/ or freeze state is not thinking at all. They have dropped into their instinctual/ reptilian brain. I find that you must find ways to get them out of this part of the brain, before any consequences can even be discussed. Nothing is getting through in f/f/f (threats or consequences will have no effect). In fact, most kids won't remember what happened at all.

The Addictive Brain
So my son remains "addicted." (The Addictive Brain) In part because his attachment issues - the (in)ability to make human connections - haven't really healed, but also because his Chronic Post Traumatic Stress Disorder means he is stuck living in a "war zone" 24/7. He carries his old "cage" with him wherever he goes.

Imagine you are in the middle of a war zone with people running and screaming, soldiers chasing you, bullets flying, bombs going off... Are you going to be able to sit down and study your math homework? NO, of course not. You are totally focused on survival.

Medications
So do kids with RAD and PTSD need meds even though meds cannot cure/fix them? I believe so. Otherwise, you are asking them to try to focus on healing/therapy while still having to deal with the war zone.

On the other hand, you can't just treat with meds. Medications can help control the symptoms, but it takes a lot of work to retrain your brain to function in a new way. This is where Therapy and Therapeutic Parenting come in. To help our kids you must have both.

I adore this pdf!!
Resource for helping teachers and children to understand what the effects of trauma look and feel like, and how to help. 🙌❤️

Download these FREE handouts for your child or young person’s teacher or trusted adult at school/college to help them understand what survival states look like in the school/college environment and what they can do to help ground them and subsequently improve their learning.

Fight or flight response is a biochemical reaction in both humans and non-human animals that enables them to rapidly produce sufficient energy to flee or fight in a threatening situation. Originally discovered by Walter Cannon. 
When presented with an immediate stressor, the body releases adrenaline, noradrenaline, and cortisol. The heart rate elevates and blood is directed away from the organs and toward the arms and legs to enable fighting or fleeing. Less energy is expended on functions such as thought and immunity because all of the body’s capabilities are mobilized to respond to stress.

Window of tolerance is a term used to describe the zone of arousal in which a person is able to function most effectively. When people are within this zone, they are typically able to readily receive, process, and integrate information and otherwise respond to the demands of everyday life without much difficulty. This optimal window was first named as such by Dan Siegel.

What Is the Window of Tolerance?

When a person is within their window of tolerance, it is generally the case that the brain is functioning well and can effectively process stimuli. That person is likely to be able to reflect, think rationally, and make decisions calmly without feeling either overwhelmed or withdrawn.
During times of extreme stress, people often experience periods of either hyper- or hypo-arousal.
  • Hyper-arousal, otherwise known as the fight/flight response, is often characterized by hypervigilance, feelings of anxiety and/or panic, and racing thoughts.
  • Hypo-arousal, or a freeze response, may cause feelings of emotional numbness, emptiness, or paralysis.
In either of these states, an individual may become unable to process stimuli effectively. The prefrontal cortex region of the brain shuts down, in a manner of speaking, affecting the ability to think rationally and often leading to the development of feelings of dysregulation, which may take the form of chaotic responses or overly rigid ones. In these periods, a person can be said to be outside the window of tolerance.

Each individual’s window of tolerance is different. Those who have a narrow window of tolerance may often feel as if their emotions are intense and difficult to manage. Others with a wider window of tolerance may be able to handle intense emotions or situations without feeling like their ability to function has been significantly impacted.
The window of tolerance can also be affected by environment: people are generally more able to remain within the window when they feel safe and supported.
Most people move between these varying states of arousal from time to time. Trauma and/or extreme stress often make it more likely a person will become either hyper- or hypo-aroused.

The Window of Tolerance in Relation to Mental Health

The stress of a traumatic or otherwise negative event may have the effect of “pushing” a person out of their window of tolerance. People who have experienced a traumatic event may respond to stressors, even minor ones, with extreme hyper- or hypo-arousal. As a result of their experiences, they may come to believe the world is unsafe and may operate with a window of tolerance that has become more narrow or inflexible as a result. A narrowed window of tolerance may cause people to perceive danger more readily and react to real and imagined threats with either a fight/flight response or a freeze response.
People who frequently operate outside of their window of tolerance may experience mental health issues, such as depression and anxiety.
A person who is often in a state of hyper-arousal may develop symptoms of posttraumatic stress, such as flashbacks, nightmares, and derealization. A person who is often in a state of hypo-arousal may dissociate, have memory issues, and experience feelings of depersonalization.

Managing the Window of Tolerance

It is possible for individuals who have become dysregulated to use techniques to return to their window of tolerance. Grounding and mindfulness skills, techniques considered beneficial by many mental health experts, can often help people remain in the present moment. By focusing on the physical sensations currently being experienced, for example, people are often able to remain in the present, calming and soothing themselves enough to effectively manage extreme arousal. These techniques, and others, can be learned in therapy.
Many individuals are able to widen their window of tolerance and, by doing so, increase their sense of calm and become able to deal with stress in more adaptive ways. Therapy, which provides a safe space for people to process painful memories and emotions, can be a helpful step for many. With the help of a mental health professional, individuals are often able to make contact with their emotions without becoming so dysregulated that they cannot integrate them. Increasing emotional regulation capabilities in this way can lead to a wider window of tolerance and prevent dysregulation.
Some things to do during a F/F/F meltdown or rage:

Thursday, December 21, 2023

Introducing Bunny and Pixie

 Introducing Bunny and Pixie!


We have adopted 2 adorable humans. Bunny, age 6 (emotional age 2-3), and Pixie, age 9, are sisters who had been in foster care for over 3 years. This was a kinship adoption so we know a little more about their history (and genetics! lol) than we did with Kitty and Bear (who are now 28 and 30!).

Yes, I now have children ages 6, 9, 24, 27, 28, and 30! When I'm waiting with other parents to pick the girls up from elementary school, I feel very old! It is kind of fun watching people's faces when I tell them I have 6 kids ranging from 6 to 30. 

The girls have some new "issues" that I haven't addressed on this blog before and some oldies too (dealing with potty issues again. *sigh*). So you'll be seeing some new posts and I've updated many of the old ones. 

Here we go again!

Tuesday, April 18, 2023

SSI How Does The Money Part Work?

 


SSI - How Does the Money Part Work?

The SSA's focus is on how the person's disability impacts their ability to work and support themself. 

Needs-Based

There are two components to qualifying for SSI/SSDI benefits. One is having a disability that impairs/prevents the person's ability to work. The other is how the disability affects the person's ability to support themself. To qualify for SSI/SSDI benefits you must show that you need the financial support.

If someone is providing all or most of the individual's living expenses, then they will not qualify for SSI/SSDI. 
Ex. If living with parents the SSA might assume the parents are providing 50% or more of support. This is one reason it is very difficult to get SSI/SSDI if you are married. {Marriage and SSI Benefits

It is essential that you show that your child is expected to pay his/her own way (paying rent and bills - see more below). 

Disqualifications for SSI subsidy: 
  • able to work enough for income to exceed $1400 per month (as of 2018); 
  • receiving an adoption subsidy/ trust fund/ annuity that is more than the subsidy amount (in 2023, $914/ mo); - one way around this is to have these monies go into a Special Needs Trust or something similar, these trusts are specifically designed to allow the person to receive SSI/SSDI benefits.
  • receiving SSDI that is more than the subsidy amount; 
  • supported by someone providing all living expenses, including institutions like prison;
  • if have more than $2000 in assets (although there are ways around this)...
SSI disability benefit amount 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 ($914 in 2023).



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 the poverty level, then SSI for a minor 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 a 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 2023, the amount was $914/month. 
The maximum benefit amount is only $914.00 (in 2023).


That's an annual income of only $10,968.00. The 2023 poverty guidelines for a single person household is $14,580.00. 

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 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 $1700.00 in SSDI then the child would receive the regular SSI benefits ($914) instead of 1/2 of the parent's benefits ($850.00). However, if the parent passes away, the child would receive 3/4 of the parent's monthly SSI benefit ($1,275.00).


Representative Payee
If you are appointed the Representative Payee, you will have to open a special Rep Payee account using the SSI benefit check. This account is technically in both your and your child's name, but your child will not have access to it. You will use this account to pay for your child's expenses like rent, food, and living expenses. 

Records
For me, it helped a lot to use an Excel spreadsheet to track the money coming in, where this money goes, bank fees, etc. (Don't let this account accrue more than $2K!). I put each year on a new page. 

I also use these records to keep track of things like how much of the benefits go toward living expenses. This will be needed for the annual Rep Payee report. 

Keeping accurate records is especially important if the person receiving benefits works. I have the formula filled in on this spreadsheet so I don't have to do the math. SSA is 2 months behind. So if you earn X amount in February, you won't see the change in your benefit amount until April. 

Document
I've had to contact SSA multiple times due to mistakes on their parts (and mine!). I've learned to note when I contacted SSA to report wages and how much it was for each month so I could keep track of whether or not the amount was correct.

I also keep my notes on the spreadsheets -- contacts with SSA, changes in job history (start/end dates/reason for leaving, company address, phone #), address changes... 
Don't forget to report all of these changes to SSA!!.
 
   That way, I can go back and look if I can't remember a date or whatever. 

Backpay.
Benefits start from the first of the month following the submission of the application. Kitty applied in mid-April and was not awarded SSI until early October; that means Kitty will have about 5 months of "back pay."  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 at the beginning of October.  We still haven't received the monthly check. It's supposed to be by 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 because 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 briefly being more than $2K in the account.



What if my child can't handle money?

Representative Payee - 
A person recognized and established by the Federal Government 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 financial guardianship under federal law.

Rep Payee Account - 
Once appointed as Rep Payee, you need to open a Rep Payee account. Do this with the first SSI check, which will be mailed to you (our "backpay" check got here first). The account will be 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. 

After you open the account, report the deposit info to the SSA to set up direct deposit. Social Security will make automatic deposits into the account once you report the banking information to them. 

The only money that can go into this account is Social Security benefitsNever make any deposits into it that are not from the US Treasury Department.

SSI payments are automatically deposited into the Rep Payee account on or before the 1st of the month.
 

Rep Payee Reporting

A Rep Payee is required to fill out an annual report. This is a very simple form and can be completed online. 

Living expenses need to be reported as a lump sum. ("Living expenses" are food and housing, and or other expenses like clothing, etc) 

The report does not request or require receipts for reporting


Getting Benefits for a Child Living At Home

Kitty lives at home so her rent and living expenses are generally paid directly to us. Each month, I transfer the money for her living expenses into our account. 

When she lives elsewhere, it will most likely be easier to pay these expenses directly from the Rep Payee account to the place it's owed (rent, utilities...).

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!

{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.}




FAIR SHARE

SSI benefits are needs-based. One thing that affects the amount of benefits received is how much support the person receives from other sources. If a person or institution is providing all of the person's living expenses (ex. prison), then the person is not eligible for SSI benefits. If a person or institution is providing some of the person's living expenses, then the amount of the benefit is reduced by that amount. 

Many people who live at home will find their benefit is reduced by approximately 1/3. This is because their "fair share" of the household living expenses is greater than their benefit amount. SSA assumes that the difference is being provided by the family. 

We recently got our daughter’s SSI benefit upped from $500/mo to the full amount of $750/mo. The amount the person receives has nothing to do with how much rent he/she pays (I‘ve never charged her more than  $300, plus a little over $100 in living expenses), instead, it has to do with the person's “fair share” of the (household living expenses). When we moved to a smaller, less expensive home, our daughter could (in theory) pay her "fair share" of the household 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 the 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 the phone is a landline, and/or part of the cable package), 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 were no longer 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 by going into your local 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 considered to be at (or below) 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 the ages of 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 takes $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 into 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, and/or 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.  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.  http://www.medicaid.gov/ 


Different Types of Medicaid

There are different types of Medicaid, including traditional and managed care options (STAR+PLUS). Every state has its 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?) have been 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 https://www.yourtexasbenefits.com.

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 #). A
s a former foster child, she had Medicaid for as long as we received adoption subsidies. 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 would with private health insurance; 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 fixed 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...).  

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 Has Private Insurance?
Private insurance is always listed as Primary and Medicaid is 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.



What If My Child Works?


Ticket to Work supports career development for Social Security beneficiaries aged 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
 here


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). The work 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).

Ex. 

Kitty worked part-time at a minimum-wage job in the evenings and on 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 the number of hours worked multiplied by the amount paid (in her case, minimum wage). 

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

$707.91
-  20.00 (by law $20 of wages is not counted)
$687.91
-  65.00 (by law $65 of wages is not counted)
$622.91
-311.46 (by law they don't count 1/2 this amount - 1/2 of $622.91= $311.46)
$311.45
+ 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).


WHAT YOU NEED BEFORE YOU REPORT WAGES BY TELEPHONE OR MOBILE DEVICE



  • 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 expenses; and
  • receipts for expenses paid to reach your Plan to Achieve Self–Support(PASS) employment goal.


Additional Posts about SSI

Getting SSI For Your Adult Child

Marriage and SSI Benefits


Disclaimer
This post was written in 2017, much of the information has been updated, but may no longer be current, correct, and/or applicable in your situation. The information provided here is for educational and informational purposes only and is not intended to be a substitute for a consultation with a professional licensed or knowledgeable in this area.

I am an individual contributor and not authorized in any way to give legal, financial, or medical advice. While I have made strong efforts to ensure that the information in this blog is as correct, complete, and up-to-date as possible, much of what you will find here is based on my personal opinion and experience. I assume no responsibility or liability for any errors or omissions in the content of this site. 

The information contained in this site is provided on an "as is" basis with no guarantees of completeness, accuracy, usefulness, timeliness, or of the results obtained from the use of this information..." Please research and verify any and all information you find here. Use at your own risk.