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 bad 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 it 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 got 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, needs-based, disability program that pays recipients a set monthly amount. The SSI program provides 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 for at least a certain period of time (see below) and paid Social Security taxes. To qualify for SSDI you must have Social Security work credits. These 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 for SSDI 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 credits for 3 years of work (12 credits) out of the past 6 years (between ages 21 and 27).

If you are a parent who receives Social Security Disability Income (SSDI) because of a disability that prevents you from working or you are receiving Social Security beneftis after you've retired (and you are at least 65 years old), your minor child can also receive a monthly cash benefit until the child turns 18.
Adults Disabled Before Age 22 (Child's Benefits)

An adult disabled before age 22 may be eligible for "child's benefits" if a parent is deceased or the parent starts receiving retirement or disability benefits. We consider this a "child's" benefit because it is paid based on a parent's Social Security earnings record, not the child's.

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 benefits (your child will receive whichever benefit amount is higher). So if either parent is retired or on SSDI look into this! {More info on this later in this post.}



Qualifying for SSI/SSDI

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. 


We have all known people with diagnoses, such as bipolar disorder, cancer, Type I Diabetes, heart disease, Chronic Fatigue Syndrome, Multiple Sclerosis, Autism, and/or a myriad of other severe conditions, who work productively for many years despite their diagnosis(es). 

Conversely, someone with what might be considered a "mild" disability (such as a borderline IQ, PTSD, Anxiety, Bipolar Disorder, FASD, ASD...) can qualify for SSI/SSDI. 


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


Compassionate Allowances
A diagnosis alone does not automatically entitle an applicant to SSI or SSDI benefits unless the disability is a Compassionate Allowance.  These are conditions Social Security has predetermined as medically eligible, which means the individual does not have to prove severity and impact of the condition – just providing proof of the condition is enough.  
For example, if an individual has Down Syndrome, the case will be processed in less than a month when the family provides documentation of the diagnosis, such as a genetics lab report or a psychological evaluation.
 
These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children. The CAL initiative helps reduce waiting time to reach a disability determination for individuals with the most serious disabilities. 
List of Compassionate Allowances Conditions

 

Severe Medical Condition

A Severe Medical Condition is an impairment(s) 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
This is the one for mental health disorders 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.


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 and support themself. The other is that the person needs financial support.

If someone is providing all or more of the individual's support, then the individual will not qualify for SSI/SSDI. This is one reason it is very difficult to get SSI/SSDI if you are married. {Marriage and SSI Benefits}. 

If a minor has a disability, then the parents'  household income is the qualification used to determine the child's need for support. This is why it is best to wait until the child is 18 to apply. Also, child support and adoption subsidies are considered income. (The only time child support and other subsidies are not viewed as income is when the child support or subsidies are directed into a Supplemental Needs Trust as decreed by the separation agreement.)

If the individual with the disability is living with his/her parents the SSA might assume the parents are providing 50% or more of support. 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 2018, $750/ 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)...
{TIP:  ABLE accounts act as “safe harbors” for resources.   Individuals with more than $2,000 in resources/assets will not pass the means-testing requirement for SSI.  By using an ABLE account instead of a savings account, an individual can save up to $15,000 each year without violating the regulations restricting resources to $2,000 or less.}

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.  

 

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) have a disability.




When Should We Apply?


It takes about 6 months for the person to be approved (or denied!). Start gathering the information you need to start 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 a minor child's eligibility is based on the parents' income. 

What Is Needed To 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 

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


The hardest part for me was the Dates - of every diagnosis, every hospitalization, every psych eval, and every meeting with a specialist (it helps to know the date started with the provider, the date of the last appointment, and the date of the next scheduled appointment). 

Not to mention the names, addresses, and phone numbers of all of these, plus every doctor, psychiatrist, therapist, agency...  

I highly recommend that you continuously Document, Document, Document this helps with this very tedious step!

SSA does not accept copies of your child's psychiatric evaluations or any report.  They have to confirm it themselves. That's why they want the contact information.


TIP: Make sure that you submit medical records that clearly show not only the diagnoses of your condition, but also demonstrate the severity and impact of the conditions(s) such that you cannot perform substantial gainful activities. The best documentation includes psychological evaluations, letters of medical necessity, DMA6 forms, and IEPS.

You can request additional documentation, such as a letter of medical verification from your treating healthcare provider, to help strengthen your case.



Getting Help With The Process - Appointing a Representative

This is what the SSA office says:

IF YOU WANT HELP WITH YOUR CLAIM, YOU MAY APPOINT A REPRESENTATIVE TO HELP YOU:

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

HOW DO YOU APPOINT A REPRESENTATIVE?


You must sign a statement naming (or in other words "appointing") your representative. SSA has an "Appointment of Representative" form that you can use. You can obtain it online at www.socialsecurity.gov/online/ssa-1696.pdf or call SSA 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 the SSA or is prohibited by law from acting as a representative.


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



IF YOU THINK YOU CAN'T AFFORD TO APPOINT A REPRESENTATIVE


If you do not have a representative and SSA denied your case, they 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 SSA authorizes.





ONLINE APPLICATION!

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.

Filling Out The Forms

1. Focus on how the disability impacts the person's ability to work and support themself when answering questions. These are the only criteria that SSA cares about.

Don't say something like, "I have severe pain and go to the hospital all the time," when describing disabilities. Instead, focus on how the disability interferes with daily life and the 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."


It is very important to focus on your WORST DAYS when filling out the paperwork!

2. Focus exclusively on the worst days when answering the questions. Although necessary, this can be very difficult for people, especially after years/decades of being encouraged to focus on the positives and the things that can be achieved.

 Despite being necessary, having to put into writing their limitations and things they can't do and/or can't do all the time, can lead to feeling like a failure which can lead to denial and/or procrastination/avoidance of completing the forms. This is one reason it might help to have someone else (like a parent or representative) help fill out this part.


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 paperwork. My daughter gave them verbal 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, etc 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 It also might help if you encourage them to focus or emphasize things that will help your case. It can make it easier for professionals to write reports if they know what kind of information the person/agency is looking for.



Adult Function Report 

Besides the application, disability report, and medical records, Social Security uses your responses to other questionnaires to determine whether you are disabled according to the Social Security Administration’s definition of the term. The purpose of these questionnaires is to learn what kind of impact your medically determined impairment is 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, this is a difficult form to complete, because it asks many open-ended questions about your life and the response time to get it completed and tuned in is short, usually 10 days. 

While this form is prepared by you, and not a “professional,” it is an important form.

 Your responses on this form will likely not “win” your case, but they can cause your application to be denied!

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 on paper 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 by the need for focusing on her limitations.


I wasn't part of helping her fill out the functional report or her interview with the SSA worker. I did help her prep for them and tried to help her understand that it was OK to talk about the issues that kept her from working and caused her need for SSA support, but I'm pretty sure she didn't follow my advice and that was the primary reason she was not approved to receive SSI benefits. 


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



Keep Copies of Your Documents

Be sure to keep a copy of everything!!  This gives you something to refer to when you're interviewed and also when SSA claims they never received it (happened to us twice!). Also, you'll have a copy with the date you sent it.  
You might want to take an additional step and submit your submission through certified mail.



Denied for SSDI - When you apply for SSI, technically you are also applying for SSDI. Don't freak out when you get a letter stating 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.


 

AND THEN YOU WAIT...
             AND WAIT...
                             AND WAIT...


Just when we'd finally decided they were missing some paperwork, or they forgot about us, or she had been denied...

We got a letter!  
The letter stated 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 of what the "needed information" was.  


We called the representative 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 verbally give permission at the beginning of the interview to speak to me. Which means that we were glued together at the hip until they called.  

Hang In There!
We waited 4 days and left another message. No answer. Called again and again on the following Monday morning, but the phone system wasn't working. We then 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. We tried calling the local SSA using a different number than the one we had for the representative and discovered that system was broken too.  

We went in person to the local SSA office.  Waited in the lobby for over an hour, only to be told that the representative had already left for the day. (They close at 3pm and it was only 1pm!).

2 more days and the representative 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, that was the "needed information." Something we could have mailed in weeks ago.  

When we arrived for the appointment (waiting almost an hour in the lobby), we were told she had already been awarded SSI and all I needed to do was sign a piece of paper stating I was being appointed Representative Payee.  

Have Your Questions Ready
It wasn't until later that I realized we'd focused 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?


DON’T give up, even if you aren’t successful with the initial application.  Nearly half of all cases are approved at the appeals level.

Other posts about SSI

Adult Function Report Questions



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.