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, 2014

The Spoon Theory

The Spoon Theory - was written by  a woman suffering from Lupus to explain to her friend why she looked "fine," but wasn't.

When you have an invisible disability, though you may look “fine,” the smallest activity can be stressful and draining. Stressful events can have a cumulative, waterfall effect, and how you react to it is based on a lot of circumstances that others may know nothing about.

We all respond to stress and anxiety differently.  Maybe with a Fight, Flight or Freeze response – Acting Out or Acting In. Our responses are greatly influenced by our perception of our environment
        (Ex.  Child tends to show both "acting out" and "acting in" behaviors at home and places he/she feels safe, but tends to only "act in" at school and in the community).

Many people are very good at hiding their stress and issues – this doesn’t mean they don’t need help.

Kitty would literally rather die than let others see her issues.    

The Spoon Theory states that a person with an invisible illness gets only a set amount of energy/ strength/ ability to handle things. Each spoon represents a stressor, and when too many are lost... The child (or us!) gets overwhelmed and runs, dissociates, shuts down, acts out, hurts themselves or others...

Examples of a typical day's stressors that could cause the loss of a spoon:
  • Didn’t sleep well (because you were upset, didn’t take your meds until late, have circadian rhythm disorder, nightmares/ PTSD flashbacks, for no apparent reason...)
  • Slept through your alarm – all 3 of them.  Your heart is pounding from Dad’s knock on your door.
  • Digging through the basket for clothes that don’t smell too badly because you didn’t do your laundry.  Will anyone notice?  
  • You’re late, so no time for breakfast – meds don’t work as well on an empty stomach
  • Can’t find your shoes… gotta find those shoes!  Ran out of time, now you have no time to grab your jacket. Brr!
  • Bus ride.  Driver frowned at you for not being ready. 
  • Try de-stressing by listening to your iPod and  tuning out the noisy kids.
  • The teacher is not in her classroom; where to go?  There's a scary kid in the behavior room.  SCARED! Hang out with friends in the hall, but feel guilty because you know you're not supposed to. GUILT! 
  • An annoying kid wants you to acknowledge that you’re her best friend.
  • TOO MUCH WALKING!  Don’t complain or people will think badly of you.
  • You're so quiet that the bus driver forgets you’re there and starts to go back to the Bus barn.  GUILT! FEAR!
  • You have to go to the cafeteria.  You're hungry, but it's so loud! Everybody is staring at you!  You're going to do something stupid!  It's too much, so you sit out in the hallway. HUNGRY!
  • Fast food, pudding, soda - Mom says you shouldn’t eat this stuff.  Food makes you feel better – EAT!  
  • You’re so ugly because you’re fat.
  • Teacher (gently) teases you about your new neon shorts. It feels like she's criticizing you. SHAME!
  • You realize you forgot to bring your (point card/ planner/ homework...).
  • Be good.  Be quiet.  Be helpful!  Don’t let anyone see the real you.  They won’t like you if they find out how bad you really are. They'll make you go away!
  • FOCUS!   Don’t let anyone see you don’t understand.  You didn’t do that right.  You’re stupid!  Everyone knows!  Why is is so hard to focus?!
  • You have an argument with a friend.  You have to mediate between your friends who are fighting.  You hurt Maddy’s feelings because you don’t want to hang out with her.  Steven is in trouble again, and you feel you should talk him out of doing stuff like this.
  • You're overwhelmed, but you don't want anyone to know. You ask to go to the nurse. Will they let you go? Will the nurse get mad? Will she send you back to class? Will they follow the Safety/ Crisis Plan? Will the counselor be in her office?
  • You sit next to someone awful on the bus ride home. You're a bad person for thinking this.
  • You see someone or something that reminds you of a time when you were hurt. Your heart races and you feel like you're there all over again.
  • Bus driver (gently) teased you about your new neon shorts. She's criticizing you! She hates you! She thinks you look stupid!
  • There’s nothing good for snack, and you may never get food again.
  • Mom mentions you left all the lights and TV on again when you left for school.  She hates you and is going to make you leave because you're bad.
  • You forgot to feed the dogs.  You're a horrible person.
  • You arrive home and check your FB/texts – you’ve get messages from biofamily, your ex-boyfriend wants to talk, your bff wants to know why you can’t come over and hang out?  GUILT
  • Mom reminds you to do your chores/ homework/ eat a snack, but you tell her you are too stressed and go for a stalk in the backyard.  Is she mad at you now?  You walk and walk, but you can't turn off that voice in your head telling you all the bad things that are going to happen to you.
  • You scoot upstairs when mom’s not looking so mom won’t remind you to do your chores.  You fall asleep for 2 hours, even though the doctor told you not to because it messes up your sleeping even more.  GUILT
  • Your tummy hurts, as it so often does, but no one cares.  
  • Dinner is late and you’re hungry.  Dad reminds you to wash dishes.  You HATE washing dishes. Dad is yelling at you! Dad hates you! He's going to make you leave!
  • Bedtime, but you’re not tired.  You read, text and watch YouTube videos until you get a little tired – long after midnight. You wake up several times in the night.
How many spoons do you have left? What do you do when you ran out of spoons by lunchtime?

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. However, 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 in to this!

Qualifiying 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 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.

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

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.

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.  Ex: 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 (> $720/ 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...

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?

Adult disability checklist: 
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

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

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.

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 stop and look up or 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.

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. 

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 SS 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 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).

States That Pay the SSI Supplement

Every state except Arizona, Arkansas, Mississippi, Oregon, Tennessee, Texas, and West Virginia currently pays a state supplement to its disabled residents who receive SSI.

You might want to open a bank account prior to the 18th birthday or at the time you apply for SSI. If you are the Representative Payee, you will have to open a Rep Payee account using the SSI benefit check.

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, Kitty will have many months of "backpay."  How we're handling that is a post for another day.

Getting the actual monthly check can apparently take quite awhile.  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: 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.

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 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 should go in it is the SSI stuff. Social Security can make automatic deposits into the account.

Kitty's SSI payment will be 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.).  

For now, Kitty will receive $15 a week, until she shows she's ready to handle more.  One way for her to demonstrate that she's ready will be to show that she can save up her money for something.  It is difficult for Kitty to understand, but even when she starts earning her own money again, she will still get the $15/week allotment (although it might go up to $20/week if her income is greater than her SSI amount.  This will continue until she can show she is able to handle her own money, including paying bills.

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 depends on the parent's income. Unless the parent is 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 another (including with his/ her parents), then it is assumed that the family provides at least some of the recipient's food and shelter so the SSA reduces the amount by approximately one third.
  • 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).  
If you work, even part-time, then this amount would be reduced by a percentage of your earned income.  For more details go here

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

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, not counting some work expenses (such as uniforms, special equipment that helps you work, and transportation to and from work).

Kitty worked part-time at a minimum wage job evenings and weekends throughout her senior year.  She increased her hours a little when she graduated in June, but then quit when she moved to Nebraska. For the months of April and May she made about $700/mo at her job - this is a Gross amount (vs Net) so it is number of hours worked by amount paid (minimum wage). This is how SSA figures wages - the actual amount on the paycheck does not matter to them).  

Ex. Kitty earned $707.91 in May 2014

-  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)
+ 240.33 (value of food and shelter*)
$551.78 Total Income counted.

$721.00 Maximum Benefit Amount

-551.78  Total income counted
$169.22 Total Monthly SSI Payment for May 2014 through July 2014

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.

Income she received in July and August ($0) affects her payment for September through October 2014.

Income she received in September and October will affect her payment for November and December.

In other words, income you receive for the 2 months prior effect your payment amounts.  If you stop working or start earning less, you need to tell Medicaid ASAP so they can increase your SSI payments (or start SSI and Medicaid again if they have stopped).

*Since Kitty lives with family, it is assumed we provide more than 50% of her food and shelter, so SSA automatically reduces her benefits by 1/3.  We planned on asking for this to be re-evaluated by submitting this form - "Fair Share" Statement, but never got around to it.

At this point, if Kitty doesn't work, does volunteer work, or goes to school, then she will receive  $480.67/mo.

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.  

**Tip** To get maximum benefits, the "Fair Share" should be less than or equal to the benefit amounts. If the person's "fair share" is significantly more than the benefit amount, then SSA will assume that someone else is providing that support and reduce the benefits by 1/3.

What Situation Changes Do I Need to Report?

Contact your local Social Security office to report (this can be done online):

  • 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 >$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. It has different types, 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.

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 had 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 (unfortunately 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="">

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 last month's prescriptions.  In fact they will not mail us a new card, so I better go find the old one!

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.

We're still exploring how adult Medicaid is different from child Medicaid. For example, I don't think it covers dental.

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 health insurance payments. Your family can pick from more doctors and has more choices than with Medicaid alone.

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...).  We had our private insurance listed as Primary and Medicaid listed as Secondary.  This means that our private insurance paid the bills, except for the co-pays - which were 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 deductible would be paid and we could get Kitty some extra services that Medicaid didn't cover.

So, in my "spare time," I'll be applying for this using this form.

What if I Want to Work?

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,

Reporting Wages

 To report earnings you have 2 choices, or maybe you need to do both. I'm not sure.

1. Telephone Wage Reporting You can call it in or use an 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.

2. 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.

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.

NOTE We will give you a "Your Supplemental Security Income (SSI) Folder" to help you keep records that we need to see (for example pay stubs). <-- count="" don="" hah="" i="" on="" t="" this="">

Another post with good info on Getting SSI For