Tragedies and Blessings

Something happened several times last year and now again this year that hit me so hard that I almost didn’t have words to express my grief.  Not one, but several Autistic children and young adults were killed, not by a crazed stranger, but by  their own parent.  One of them was not too far from us in another suburb of Chicago.  Others were in various places around the country, but each one of them had their life taken by the one person who should have protected them.  Reactions were strong on both sides.  Some people saw the parent as a victim; others viewed them as a monster.  I guess victims sometimes become monsters.

Certainly the government and society as a whole may have failed both parents and children.  The government has failed my own child when it blocks access to needed therapies.  Society fails him when they fail to believe in his capabilities or he is excluded from certain activities.  Government fails him when they fail to provide a free and appropriate public education or refuse to help keep him safe.  Society fails him when they don’t care.  Both society and government have failed parents as well.  Respite care and mental health services are often not available to parents when they need them.  Parents feel like they are fighting an uphill battle every day and become weary.

Sadly, some organizations have painted Autistic children (and adults) as a burden in their efforts to raise funds – a burden on their parents and a burden on society.  That view has been adopted by the people that look at us with pity and say that they could “never handle” having an Autistic child.  Yes, yes, I know that they are trying to be sympathetic to what they see as a difficult situation.  Their intentions are good and for that reason I truly do not judge them, but it makes me sad that they cannot understand the tremendous blessings that come with having P as my son.  At one time I would have said that I love P, but don’t love Autism because it makes his life hard, but I have come to realize that am just not sure who he would be without Autism.  Being Autistic is part of his identity and although I will help him to achieve his goals and have as many options as possible, he is not, we are not, victims of Autism.

In certain situations it is not an advantage, for example, that my husband was not born and raised in this country.  People can make unfair judgments based on his accent or based on the fact that he looks differently than they do.  Likewise, when I was overseas it was sometimes not an advantage to be from the USA because of some people’s thoughts about what “Americans” were like.  Still, it is not a tragedy that I am from this country.  It can make things hard in some situations, but it would be wrong for me to be ashamed of my country or for another to be ashamed of their own ethnic background.  In the same way, Autism should not be heartbreaking.

What is heartbreaking is the refusal of many to allow Autistics to communicate in their own way or to calm their anxiety in ways that seem “inappropriate,” like flapping arms or spinning or whatever is helpful to that individual.  What is tragic is when schools do not seek out new methods of teaching when the old ones are not appropriate for the learner.  What is sad is when people assume that not being able to communicate verbally equals no intelligent thought.  What is truly devastating is when a parent feels that their child’s life is so worthless that they would be better off dead.  The thought of it brings up the familiar sadness that I feel when I hear that it was probably a “good thing” that so-and-so had a miscarriage because the child would have most likely been disabled.  Again, I have no judgment here, truly, because I know the intent is to see the “positive” in a very difficult situation, but in my heart it hurts because it says that this person believes that the life of a disabled person is worth less than a person who is not disabled and I know that they just don’t know the truth – that the joy of loving a child with a disability is the same joy that every parent feels.  It is not, in any way, diminished by a diagnosis or atypical behaviors.

So then, why would a parent kill their own child?  Maybe it was frustration and exhaustion because they couldn’t make their child “normal”?  Why was that even the goal?  I really can’t understand it and it can never be excused or justified.  I know, I really do know, the frustrations of raising a child that is greatly affected by Autism.  My son is basically non-verbal.  He has never once answered back to a, “How are you?”.  He has gotten out of the house and just keeping him safe is a constant challenge.  We have been through periods of potty training issues and feces smearing and all of the challenges that go with Autism, but I can say with 100% sincerity that he is a joy.  His life is a blessing beyond what I could ever measure and I love seeing his beautiful face every single day.  His life is just as valuable as yours or mine.

Pablo on my lap at PC

P

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Applying for Social Security Disability Benefits for Children

I was so saddened earlier this year to hear an NPR story on the rise in Disability benefits for children.  I won’t go into the details, but, among other things, it claimed that parents of children receiving Disability benefits do not help their children progress because they want to continue to receive SSI benefits for their children as a child with a disability.

How could you do this to me, NPR, when I love you so?

In NPR’s defense, it was an opinion piece, but it was just so misleading!  See here for a thoughtful response to all of the errors in the piece.

After much persistence, we are currently receiving SSI benefits for P.  Some months we do not qualify because we go over the income limit (and it is not much), but when we do qualify we will receive a small deposit to help offset some of the huge expenses we have as a result of having a child with a disability.

The SSI Disability is a program that provides financial help for low income families that have children with a disability resulting in severe limitations in daily functioning.  If you know anyone that has a disabled child, you know that the expenses facing families dealing with a disability are mind-boggling.  In our case, we have had to purchase separate insurance for P, which cost us several thousand dollars in a period of less than a year.  We have bought him his own iPad and a special communication app (about $700) because he absolutely needed it, we have bought educational products that work for him, things to address major sensory issues and many other things that P needs, just to give him a chance to succeed.  There are many other things that he needs right now, like intensive speech therapy, that we just cannot afford to give him, no matter how frugal we are.  While other families are deciding whether to pay for baseball teams or piano lessons, our children have to forgo all of that so that we can give P half a chance to learn to speak.  To be clear, this is not a complaint. I am harbor no bitterness toward others who can give their child piano lessons because we cannot do those things; I just want to let anyone who thinks we and other families dealing with disability are living comfortably off the government know that they are mistaken.

SSI is a program that helps low-income families to pay for some of the things that their child needs.  If there has been a rise in people participating in the program it is because many people are currently in need.  Unemployment is high, wages are low, and many earn much less than they used to earn. I am sure that there are abusers of the program as there are for EVERY public or private assistance program, but I can assure you that it is not easy to qualify.  There is no evidence of widespread abuse.  Even a serious diagnosis, such as Autism, will not get you approved.  The child must have severe limitations to qualify and the parents must be low income.

After our nightmare with applying for SSI, I promised myself that I would do a blog post in hopes that it might help another family.  For a long time I did not even apply because I had a hard time figuring out if we were eligible.  Information about SSI for children can be complicated and it most of what you find on the internet is for adults that are disabled (SSDI), which is not the same.  I hope to answer some questions that others may have below.

Q: Do we qualify for SSI?

– To receive SSI for your child, your child must have a severe disability that will last for at least 12 months.

– You must have limited resources.  All of your assets cannot be over $3,000 for the parents and $1,500 for the child.  There are certain things that qualify as assets and will be counted, and others that are “exempt” and are not counted.  For example, the family can have one car that does not count towards your assets, but if you have another car, they will look up the value (usually lower than actual value) and tell you that it counts as $___ towards your assets.  Your house is usually exempt and a tax refund is also not counted in your assets, for a certain period of months, so if you got a big refund and have not spent it all, make sure to bring evidence of that and point it out at the interview.  If you cross the limit, between money in the bank and other assets, you are disqualified.

– Your income must be less than then a certain amount monthly.  Assuming the child does not yet work and does not receive child support, the amount is determined by several factors:

– How much of your income is earned (from a job) and how much (if any) is unearned (given to you by someone else, like a government agency)?
– How many parents in the home (one or two)?
– How many of your children are disabled?

For example, in 2013, if you have two parents in the home, only one child is disabled, and the only money you receive is from your employer(s), these are the maximum amounts you could make per month and still be eligible for something from SSI:

One child (disabled)    $3,677
Two children (one disabled)    $4,033
Three children (one disabled)    $4,389
Four children (one disabled)    $4,745
Five children (one disabled)    $5,101
To see the limits for other family situations click here.

Q: What are the steps to apply for SSI?

1.  Call the national 800 number.  Tell them that you want to apply for SSI for your disabled child and they will set up an appointment in person or over the phone with your local office.  Their number is 1-800-772-1213 (TTY 1-800-325-0778) and they are available between 7 a.m. to 7 p.m., Monday through Friday.  Expect a long wait.  You can apply for benefits for adults online, but that is not yet available for children.  Our office was about an hour away, so “local” may not be all that local.  When I called the operator told me that we did not qualify, but that I could apply anyway if I wanted to.  I had done quite a bit of research and I thought she was mistaken, so I just said, “Yes, I do want to apply anyway.”  As it turned out, she was incorrect.  She was thinking of income limits for adults, not children.

2.  At the initial appointment, bring:

Documentation of your child’s disability**:

-The Child Disability Report filled out (https://secure.ssa.gov/apps6z/i3820/main.html)

-All the most recent (preferably within 12 months) reports from doctors, therapist, specialists, etc. that demonstrate your child’s disability.  If you haven’t had a recent visit, it would be helpful to visit the specialist that addresses you child’s disability.  In the case of Autism, a developmental pediatrician, neuropsychologist, etc.

-Your child’s IEP if they are in school, IFSP if they are in Early Intervention.

(They will tell you that you don’t have to bring the reports, but it will help you because once the case reaches the person that is looking at the medical aspect, they want they information immediately or they will close your case, so if they already have it, you do  not have to worry about the doctors/therapists/teachers not sending in reports.  It is already in their hands.)

Documentation of your assets:

Car title, Bank account statements, life insurance, etc.

Documentation of your income:

All checks received for the last 30-60 days.  Income and expenses if you are self-employed.
Lease or mortgage statement (because if you do not pay rent or mortgage, they will count that as income because someone is paying it for you).

Documentation of any other assistance received by anyone in the household:

Food Stamps, anyone else on SSI or SSDI, pension, etc.
At your appointment, you should receive a confirmation number to check on the status of your case.  A “normal” wait time is three to six months.  For us, it took a little over two months for them to even start looking into whether he was disabled or not medically.  The examiner called me to clarify some things on the report and I was able to fax her the additional information she needed.  I would call to check on your case after six to eight weeks if you have not heard anything yet.**

3.  An examiner will determine if your child is disabled.

Just because your child has a diagnosis of autism or some other serious disorder does not mean that you will be approved.  The question is how much it affects his/her daily functioning.  Accommodations in your child’s IEP can show this.  Level of functioning documented by your child’s doctor or therapists are also helpful.***   See http://www.ssa.gov/disability/professionals/bluebook/112.00-MentalDisorders-Childhood.htm#112_10 for details on who qualifies under Autism/PDD.  There are other rules for other categories.  Be realistic about your child’s challenges.  We all believe in our children and see all of their wonderful positive qualities, but this is the time to emphasize the negative :-).  What are the challenges that your child faces in daily life?

4.  The case is sent back to the local office for them to determine whether your income and assets are still low enough to qualify.

This is where our case went wrong.  For some reason, they counted one of our bank accounts twice.  Also, we received a tax refund that they counted, but should have been exempt.

5.  You will receive a letter (and a deposit if you are approved) that will tell you how much you will receive.  If your income varies at all, you must report it monthly.

Q: Should I hire a lawyer?

Maybe.  There are some attorneys that don’t take your case until you have applied and been denied.  They will help you with the appeal.  Usually, you will not pay anything up front for an attorney to represent you.  If they think you can win, they will take your case and then they will later receive a percentage of the back pay.  I, personally, did not feel that an attorney was necessary for our initial application, but thought that I would use one if we needed to appeal.  Later, when they made an error in calculating our assets and send us a denial, I wished I had an attorney because it took another four months to get it straightened out.  An attorney can also help point out things that may be exempt in counting your assets.

Q: Should I call to check on my case?

Yes!  After months had passed I checked on my case and found that they “thought” they sent me a letter that they never did send me, telling me to bring in my financial statements again after being approved (see step four above).  Every step has deadlines. (There are deadlines for you; they have no deadlines at all).  Things have to be completed (by the applicant) within a certain number of days or you will end up being denied.  There is no harm in checking on your case and you will probably have to be persistent.

Q: What is back-pay?

The day that you apply is when the benefits start, but while it is going through the approval process you have to wait for the check(s).  If you are eventually approved, they will pay you starting from the date that you applied, assuming your were eligible all those months.  If you were eligible (based on the financial records you bring) for a partial payment, they will pay you a partial payment for that month.  It is very important to keep all of you financial records, every paycheck, etc. since the day that you apply (and they will ask you for a month or two before that at the initial interview).  You may get back pay in one payment if it does not surpass a certain amount, or you may get it in several payments that have certain limitations on how you can spend them.

Q: Are the people at SSI evil?

It depends when you ask me this!  Just kidding.  I suppose that they are not evil and are not trying to make your life miserable, but they are really overwhelmed with cases.  If you don’t call them, you may never get an answer.  I had to call at least ten times and leave messages for the person assigned to my case to just get a call back.  Sometimes not even that worked.  That was when I wished I had an attorney.

I am not an attorney nor am I any kind of expert in applying for SSI, but if you are considering applying or are in the process and you have a question, I would be happy to try to help based on my own experiences and research.  You can send me a message under the “About Me” tab at the top of this page.

 

** Make a copy of everything you give them because things get lost!  I asked doctors and therapists to send them to me, so that I had a copy and then I send them to SS.

***SS will expect you to get everything they ask of you immediately, but they are in no hurry to get back to you.

Theology of Disability

Having dealt with “disability” in my children in one way of another for the last nine years, I have been thinking for the last few weeks about a “Theology of Disability” and by that I mean: What is disability, from a theological perspective?

I have spent the last few years with some related thoughts running around in my head about suffering and the purpose of suffering. Suffering and disability seem to be inevitably linked. Not that a person with a disability is doomed to a life of suffering and sadness, but where there is a disability, one will most likely suffer because they cannot do something or can only do it with greater difficulty and they will often have to be somewhat dependent upon others. For the great majority of people with a disability there will be some kind of pain – physical pain that one feels and/or emotional pain from isolation or lack of independence.

My first thought was that neither suffering nor disability existed in Eden and it will not exist in heaven, so can it be a good thing? Jesus went around healing people, not telling them that there was a greater purpose for their sickness or suffering (exception being John 9 – the man born blind so that God would be glorified, but he ended up healing him too).

Some of the erroneous views on disability that I have seen and evaluated are:

1. Disability is a mark of sin. It did not exist in Eden and exists only because we are in a fallen world. The predominant Old Testament view of suffering and sickness (like Job’s friends) would be that the individual or the person’s parents had sinned, causing the person pain and suffering, but Job and the man born blind in John 9 contradict this view. We see a form of this erroneous view today in circles where the person with a disability is told that they have not been healed because of their lack of faith.

2. The individual must accept their life as “less than” a whole person. This view would keep the lepers “outside the camp” (Lev. 13:46). It would tell a person with a disability to accept their lot in life as an outcast and be glad that some may throw you a piece of bread once in a while. Matthew 8 describes a leper that dared to come and kneel before Jesus and express his faith that Jesus could “make him clean.” Jesus does not tell him to remember his place; he heals him instead.

3. People with disabilities are in the world to teach the rest of us lessons about _____ (fill in the blank here – kindness, compassion, gratitude, charity, etc.). Surely all of us have learned to be more generous when faced with others that have any kind of need, but that is not the meaning of that person’s existence. Each person has been created as an individual with dignity and worth. This view treats people as non-people that exist as an object lesson for others.

It is clear that while some of these views seem to have a bit of truth linked to them, none of thems acknowledges the worth of the person and their capacity to glorify God within His plan for their lives, which, of course, none of us can do except for by His strength through the power of the Holy Spirit working in our lives. What, then, can we say is a Biblical view of Disability?

1. Any part of life on this Earth that is not as it was in Eden, nor as it will be in heaven is a reminder of the fact that we live in a fallen world.
Just as when we are sick and long for a day with no sickness we are acknowledging that the world is not yet as it should be and there is a desire for a world un-marred by sin. That is a good thing because pain is reminding that there is something wrong with our present state. If we were to go through our entire lives with no pain, we would not have that longing for something better and that “God-shaped vacuum” that causes us to seek Him. If we were unable to feel pain in one of our extremities, we would never know if we were injured or is something was not right and needed to be fixed. Our pain reminds us of our need for God.

2. There is strength in apparent weakness.
It is widely believed that the Apostle Paul lost much of his vision in later years. We don’t know if it was this or another difficulty that he spoke of in his second letter to the church in Corinth, when he said that the Lord did not remove this “thorn in the flesh” because “[God’s] power is made perfect in weakness.” 2 Corinthians 12:9 (NIV)

Listen to the paraphrase from The Message:

Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough; it’s all you need.
My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.

(2 Cor. 12:7-10 – The Message)

Those who have a “disability” have actually been given a “gift.” It is in our dependence on God that we find supernatural strength. I can say that I depend on Him when all goes well, but the more often I am forced to trust in His faithful provision, the more my faith is stretched and the stronger my faith muscle grows. Disability does not always equal a deep spiritual life because the individual has to choose what to trust in, but it is an amazing opportunity for “Christ’s strength moving in on my weakness.”

I know that there is so much more to this topic, and that I have barely scratched the surface here, but sometimes I just have to sort some thoughts out on paper (or PC in this case). I am learning to trust God and I pray that my children will also trust God deeply and develop a profound relationship with Him.