Friday, March 28, 2014

Requesting an Audience

Last year I attended the Opening Ceremonies for the Mecklenburg Special Olympics for the first time. It was a great experience - with each school marching into the Bojangles Coliseum, waving flags and dancing to the music. The one problem was that Logan, Sean and I were 3 of perhaps 15 people in the audience of the huge coliseum. We cheered as loud as we could, but how wonderful would it be to have many more people cheering these athletes on? 

Opening Ceremonies are Tuesday, April 22 from 10am-Noon at Bojangles Coliseum at 
2700 East Independence Blvd, Charlotte, NC

How can we get more people there?

Thursday, March 27, 2014

SSI Debacle Continued

If you are following my story about Social Security Administration and Supplemental Security Income for Ben and waiting with bated breath for the end of the will have to wait a bit longer.

In my telephone conversation yesterday, the claims representative did tell me that based on the information we provided, we still have the whopping over payment. Our next step is to file a Waiver of Overpayment. I actually had the forms ready because I was pretty sure we were headed in that direction. Tomorrow I will drop it by the SSA office.

Thank you again for all the good thoughts and concern sent our way. We appreciate the support. This is just a small bump in the road, one we will learn from and move on. When Ben applies at 18 for SSI (the rules change and parents resources are not counted), we will be better prepared.

And one day, in the very far and distant future, we will laugh about our dealings with SSA.

Wednesday, March 26, 2014

AFOs: The Fitting

A few weeks after casting Ben's AFOs, we visited Steve again for a fitting. The AFOs are completed, but still need adjustments.

A small boot was fitted over Ben's special long socks. The top of the boot was softer than the ones he had in the past. It was rubbery. The rest of it was a hard plastic. A very soft tongue was glued inside of the boot to make sure that nothing hard rubbed against Ben's foot. This was new for us. Typically, we had the tongue, but it was detached and we were forever losing them and yelling for someone to find a pringle for Ben's brace - that's what we call the tongues, "pringles".

The extra length on the orthotic is trimmed off by Steve on site.
After the boot, a hard plastic orthotic was put on. This held the straps that keep the AFO in place. This time, Steve decreased the straps from three to two. 

The change in strap number and glued in tongue made putting on AFOs faster and easier. As you can see in the photos, taking them off was easier too.



Outer Orthotic

Boot inside Orthotic

Go Panthers!

Monday, March 24, 2014


Being completely consumed by the latest issues (bathroom and SSI) can be exhausting. I try not to let it wear me down too much. Life must go on and enjoying what we have in front of us and living in the moment is better for my health and soul.

Ben has been doing so well in many ways these past few months. Above all, he is happy. We see it everyday in the way he interacts with the people around him, how he gives love through his hugs, smiles, kicking legs and squeals.

If Grandma comes with me to get Ben from school, with the way Ben  reacts, you would think Bob the Builder just showed up at his school. 

These laughs were during a tense game of Monopoly. I guess Ben knew we were all going to lose to Logan, again.

Ben's happiness is contagious. If he has the giggles, I let that consume me. 

Sunday, March 23, 2014


Ankle Foot Orthotics are custom made to fit the patient's foot and leg. It is painless - just a bit of sitting tight and waiting for the the orthotist to work his magic. Ben's orthotist, Steve, has been fitting Ben for at least six years. When he moved companies, we moved with him. Steve is a great guy - patient, quick and personable. Ben likes him a lot.

This is the process for the fitting:

A sock like cloth is first put on Ben's foot. Its purpose is to protect Ben's leg. Ben hates having his pants up,
so he fights us by trying to pull his pants back down.

Next, Steve wraps Ben's leg with a tape material, that is wet and will harden quickly over the sock. The yellow plastic guide comes in handy later when the cast is cut off.

The entire leg and foot get wrapped tightly to later be used as a form for the orthotic.

The plaster needs a few minutes to set, but then, Steve can start cutting.
Steve uses a scissor type tool to cut the cast along the yellow plastic guide.

Finally, the cast is cut and the yellow guide is pulled out.
Cast is pulled off the foot and then sent to a laboratory to be used as a form for a real plastic ankle foot orthotic. This post will show the results.

Saturday, March 22, 2014

Another Very Special Ben

A four-year old boy, named Ben and also with red hair, is facing a serious illness, brain cancer. His mother tells his story in her blog, Pray for Ben Sauer. They are looking for a miracle through prayers and support. The story is intense and inspiring - the mom shares openly the raw emotions she feels as their situation unfolds.

Thursday, March 20, 2014

SSI - Patiently Waiting

The follow-up meeting with Social Security Administration was this week. We spent the meeting reviewing paperwork, answering questions and planning for our next phone meeting.

Basically, everything is still up in the air; however, I do believe that we will have to file a Waiver for Over Payment. I do not think that anything I provided will change the outcome. In order for the Waiver to be approved, I will have to prove that (1) we do not have the money to pay it back (not hard) AND that  (2) the over payment was not our fault (hard but not impossible).

With Supplemental Security Income, a family may not have more than $5000 in resources. This includes any money in the bank (checking and savings), stocks and bonds, vehicles and a number of other items. One car is excluded off the bat, but any other car either has to be financed with its equity counting toward the $5000 resource limit.

We do have a second car that is paid for and the value is $4500. We can have $500 in checking and savings. This does not give a lot of wiggle room.

The cause of our problem is because of two unconventional issues:

1. Our mortgage company does not escrow our property taxes or homeowner's insurance. We have to put a specific amount aside each month into a savings account. The savings account is strictly for these two bills. I have told the SSA during each annual review about this issue, and we have been told that it was not a problem. Now we are finding out that it is an issue and counts as a resource.

*If our mortgage company collected our property taxes and homeowner's insurance, then we would not have a problem.

2. When we financed our minivan in 2008, we used our home equity loan because it was a lower interest rate, and the interest was tax deductible. Again, during each annual review, I made it clear that the car was financed through our home equity line. I even have paperwork I gave to SSA in 2012 to show the balance.

*If we had financed our car with a regular auto loan, then we would not have a problem.

Of course, until you go through something, you do not completely understand the ins and outs of a process and the rules and regulations. We could and would have made different decisions if we had known that these two issues would come back to bite us. To us, a loan was a loan and it made better financial sense to use our home equity loan to finance the car. For the property tax and homeowner's insurance, we could have paid the amount monthly to the city and insurance company, rather than hold it in the savings account for each annual bill.

One thing I did, which I wish I had done at all our past meetings is take notes and then type them up in a summary. A copy will be given to Social Security Administration (SSA) to stay in Ben's files and I will keep a copy for myself. I included the following:

  • date and time of meeting,
  • people present,
  • items discussed,
  • follow-up meeting date,
  • what the staff member will provide me; and
  • what I will provide SSA.

I have every confidence in the staff member with whom I met. She was competent, compassionate and will do what she can within the confines of the rules and regulations for our case.

My last post about my issues with SSI generated many great responses from readers. I appreciated every comment, idea and suggestion. I even enjoyed reading the differing viewpoints about whether to bring Ben to the meeting or not. I did not bring Ben, and I am grateful for not doing so. I was there for over two hours, and Ben would have been miserable waiting while information was typed into the computer.

My husband and I researched each suggestion from the comment section, and I printed out copies to bring to the meeting. I asked questions about points I thought might apply to our case. None made a difference, but as long as I leave no stone unturned, I will have peace with this process.

Thank you for the support through emails, comments and Facebook shout outs. Although I went to the meeting alone, I brought with me the feeling of support from many friends, family and readers.

As this saga unfolds, I will share what I learn so that others that come after me will be able to make more informed decisions. I am hoping that my hindsight will provide someone else with 20/20.

Monday, March 10, 2014

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch.

Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars.

Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies for its own post) which has created its own set of applications and paperwork. This morning I lay in bed, waking too early because of this darn time change, and thought about what I have learned from this experience and what I could pass on to others. So here is what I have learned so far:

1. Keep records. My mom helped me organize mountains of letters from Social Security and to Social Security. I will be armed with a file box ready to bring with me tomorrow. I kept fairly good records of who I spoke with on the phone, but not great. I recommend a phone log with date, name, identifying number for person, and exactly what was said. If possible, record those phone conversations with their permission. If you do not have that capability, then write a summary of the conversation and send them a copy for their records and keep one for yourself.

2. Bring client with you to meetings. Tomorrow Ben is coming with us to the meeting. I have gone by myself in the past, and I think having Ben there will help see that it is not me they are helping, but Ben. *Please see the comment section. Depending on the type of meeting you are having, you may decide against bringing your child with you.

3. Not so easy to lawyer up. I have called and spoken to more attorneys in the past few weeks than I have in my life. Not one helps with over payments with SSI. They all help with getting SSI because there is money to be made from it. With over payments, clients potentially owe the government and they do not have money to pay a lawyer.

Also, SSI is a very specialized field and only lawyers with this knowledge will be helpful to you. It is an intricate and specific law so any type of lawyer will not do. Nor will you find one that wants to try it out. Believe me, I tried.

Legal Aid or some form of this free or sliding scale legal service in your area may be of assistance. I have waited for over a week to hear from them and the moment I wrote "lawyer up" in this post, they called me back. Karma or coincidence...I don't care as long as I have some help!

4. Be organized. This goes along with the keeping records - but good records are nothing if you cannot find anything. All documentation needs to be stapled, organized by date and kept in one folder, box or cabinet. It will help your case to show that you have kept up with everything and have it ready at your fingertips.

5. Take the emotion out. Coming from me this says a lot because I can yell with the best of them, but this will not help my son get what he needs. I am angry because at some point, either someone did not catch the mistake or let it slide, but now we are paying the price. However, making enemies with the staff at Social Security is only going to get me on a list somewhere, and not a good one. Stay calm, be direct and be prepared. Show respect for the people you are meeting with so they will give you the same amount of respect.

6. Be persistent. File all the appeals and waivers you are given. Attend the hearings and meetings. Get the names and phone numbers of people you meet with and contact them to ask questions. I do not recommend harassing them with phone calls. The staff are people just like us, trying to do their jobs. However, I have heard from more than one person that you may get different answers depending on whom you speak with.

7. Determine your worst case scenario. Worrying about the unknown is by far the worst kind of worrying. Making things up in your head often leads to inflated disaster. Once we got past the unknown, we realized that the worst for us would be to pay back the money. Since I heard from an attorney that you can setup a payment plan of just $25 per month until the amount is paid, we relaxed a bit. It may take us to our deathbed, but we can manage those type of payments.

8. Pray. A few words to your higher power can help at least relieve your stress and put it in the hands of something bigger than you.

Please say a prayer for us tomorrow - that we find a resolution and can move on.

** At 4pm today, I received a call from the person handling our claim at te Social Security Adminsitration. In order to give us more time, she asked to move the meeting to next week. She also gave me a list of items she needed for a complete review (many I have given before, but I will comply again).