Thursday, April 30, 2015

SSI: The Final Chapter, Part 2

Just last week, we received a letter from the Social Security Administration letting us know that we proved our case, and we do not have to pay back Ben's past Social Security Income. This was incredible news and lifted a huge amount of stress off of us.

It all started over 18 months ago when we received a letter cancelling Ben's SSI payments. Here is what I learned along the way and if one person learns from our mistakes and is able to avoid some of the frustration we faced, I will be pleased. I did not add any specifics because they may change or be different for your case. *

Know the requirements - SSA has very specific requirements about what makes a person qualify for Supplemental Security Income. It may all be found online. Know what these requirements are, determine if you meet them and be able to backup everything that proves that you qualify. Not knowing will only bite you in the butt later.

Lawyering Up - If you want an attorney to help you resolve a case on appeal, good luck finding one that will take your case. I called dozens. There is no money to be earned by an attorney at this point, so no one does it. If you are going to use an attorney to help with Social Security benefits, it needs to be on the front end.

Eventually a paralegal at a non-profit legal advocacy group acted as a consultant for me. She answered questions and helped direct me to the correct forms and kept me on track with the process.

1st of the month - Your bank balance on the 1st of every month is checked electronically and reported to SSA. If it is over a certain amount, this may count against you. It does not matter if you get paid on the 1st of the month and then it all disappears by the 2nd to pay for bills electronically. They do not care how it was used or if it was used 24 hours later to pay bills.

Explain all cash deposits. In one of our final meetings with the SSA staff member, she told us that we had deposits made into our account that were unjustified. When asked for the amounts, I knew instantly they were our tax refund checks and loan checks from our home equity loan to pay for unexpected auto or home repairs. According to the staff member, neither of these would count against us in SSA. I was able to provide bank statements to show any direct deposits from the Department of Treasury. In one case when a paper check was mailed to us, I tracked down a copy of the deposited treasury check.

Keep track of your vehicles. SSA has very strict rules about the number of vehicles owned - keep records of sold vehicles or ones totalled in an accident. Be sure that SSA has accurate records of ownership so that you do not get penalized for a car you no longer own. I actually showed police accident reports and insurance records to prove that a car had been totalled.

Be willing to open every piece of personal financial information to SSA. I mean everything - from telephone and cable bills to food and gas costs. In the appeal process, I was asked to complete charts about every single dollar we spent and then provide copies or receipts for each item.

IRA distributions are taken into consideration. When Ryan left his job four years ago, he had $211 in a company IRA. We moved it to a Roth IRA through a financial institution, never even seeing or touching the money. This became an issue and we had to show that we did not cash out the IRA and use it as income. I had to prove this particular incident twice.

Understand that SSA is understaffed and overworked. I thought that if I supplied SSA with every piece of information they requested, they would see that we were following procedure and realize that we were in compliance with their rules.

I spent long hours and days gathering information they needed. I hand-delivered envelopes of bank statements, copies of bills and credit card statements. All of these items were lost. It was explained to me that sometimes when a large packet is received and someone has to stand there and scan it in, it does not happen. My packets are sitting at the bottom of someone's "To Do Someday" pile.

Document everything. Record phone calls, meetings and annual reviews. You will have to check to see what is legal to do, but at the very least, keep notes of meetings and send a copy to your SSA file. At this final meeting, I brought a large file box with everything in it.

I was not as diligent as I am telling you to be here because this is in hindsight. If I had known what we would have faced in 2013, I would have done all that I am telling you to do here. I did not have notes from our annual review meetings.

Certified Mail. I sent endless packets to SSA, giving them everything they requested. In the end, it seemed that some of my papers never made it anywhere except the bottom of someone's pile or in the circular bin. Sometimes I used certified mail requiring a signature and other times I dropped it off directly at the office, and took a photo of the security guard taking it from me. I recommend sending it certified mail, signature guaranteed, keeping photos or copies of everything you sent.

Give Up or Get Help. After 18 months of fighting this on my own, I was ready to give up and set up a payment plan of $25 a month for a very, very long time. Luckily, my husband asked if he could attend the personal conference that was setup to review the case. When we went into the meeting, he explained the same issues I had gone over so many times, but I was so emotionally drained from the experience, I would have been a puddle of tears or a raging lunatic. He, too was emotional, but he kept it in check long enough to explain the inconsistency in SSA's procedures with us - proving to this staff member that this was not our fault.

Taking It All the Way. It has been a long haul, but we proved our case. It took hours of phone calls, research, computer work and meetings. The stress and anguish Ryan and I both felt over this was terrible. In the end, I just wanted it to be over, even if it meant paying it back over a long time. I could not go on arguing with different SSA representatives, explaining our case again and then providing paperwork that was never reviewed. At the last meeting, I was so upset that my paperwork had been lost that I had a very hard time moving on to anything else. I was so angry that so many hours of work was for nothing.

Find Someone and Make a Connection. In the end, the ONLY reason that this was resolved is because: it was not our fault, we did not have the funds to pay it back and most importantly, we were assigned a caseworker who took us seriously. If not for her diligence in the matter, we would still be fighting or had given up. She listened to Ryan's arguments, researched them from her end and found that what we were saying was true.

My explanations above are from what I experienced. I do not list any specific requirements because this should in no way be used to see if you would qualify for SSI. SSI is a complicated process and only SSA representatives can give you specific information. This is only to give you assistance in planning for the SSI process and know what questions to ask if you find yourself in a similar experience.

Wednesday, April 29, 2015

SSI: The Final Chapter, Part 1

*This SSI issue has been going on for some time. It is now resolved. I wrote this in February, but waited to post until resolution was final.

There was no line to get into the Social Security Administration office, which was unusual. The security guards, the same ones I have seen each time I have paid a visit, do everything but frisk us. Luckily, my weapons and belt were at home. The government issued walls were gray, seats for 100 people were tucked in tightly. The saying, snug as a bug, came to mind, with bug bolded and underlined. Windows around the perimeter served as some of the meeting space for Social Security workers and their clients. Windows had thick plexiglass strips about every five inches. I imagined it kept someone from jumping through and throttling the staff.

When the case manager called our name, we followed through the door into the bowels of SSA. She did not speak, but expected us to follow. She was an older woman, whose demeanor seemed unpleasant. She showed us where to sit, and then she walked through another locked door to come around behind the plexiglass window to her desk.

Without a greeting or smile, her very first words to us were, "You own five cars." If not for my hand on his back, Ryan would have been the first man to jump through that plexiglass barrier. After a calming down period, we explained that at no time have we ever owned five cars at once, and slowly reviewed the five cars we have owned since 1997. The rest of the meeting was emotional for both Ryan and me. We were exhausted by the end. Our frustration level was high and at times, we were tense.

About an hour and a half later, we were armed with new information to research for the case worker. We were ready to leave when she started talking about her part-time hours at SSA. She explained that she was in school so it may take longer for her to review our case. Within minutes, the woman shared that she had real aspirations of becoming a lawyer and working with war veterans, a passion of hers. Slowly, a glimmer of a person shone through the rough exterior we had seen up until then. She shared that she was from Seattle. Ryan casually asked about what team she supported; this was days after the Seahawks won an incredible football game against our Carolina Panthers.

It was as if a door opened, and a new woman came out to talk with us; one who was the biggest Seattle Seahawks fan on the East Coast. She instantly looked ten years younger, her smile appeared and we were regaled with stories about the 12th Fan, her paraphernalia and her experiences sitting in other teams' cheering sections, ready to pull out her Seahawk gear at the right time.

This unexpected connection with the case manager changed our mood considerably. We knew with certainty that this woman, who showed us strength, passion and excitement, would read our file and resolve the issue. In favor of us or not, she would dedicate the time and energy needed to follow our complicated case. This was all we had wanted all along, and it seemed we finally had someone to do just that.

And, yes, we cheered on the Seahawks on Superbowl Sunday.

More Posts on Social Security Administration
A Lesson of SSI
SSI - Patiently Waiting
SSI, ALJ, LMN & Other Three Letter Acronyms
SSI Debacle Continued

Monday, April 27, 2015

Love and Basketball

Yesterday, I took Ben to the YMCA, and we watched men play a lively game of basketball. Later, in the lobby, Ben's strap on his wheelchair broke. I had to take him out of the chair and enlist help to fix it. In the minute it took me to find someone, Ben crawled back into the gym to watch the game.

Ben was intense at this point, watching the game and yelling when they were about to score. He started sliding his little behind toward the court.  He was trying to get in the game. More than anything, he wanted the ball.

This was a serious pickup game, and Ben did not even get a nod. It was nothing against Ben, these men only had eyes for the basket.

At the same time, two or three boys about Ben's age started playing on the court when the men's game took them to the other end. Ben was doing his best to get someone's attention - if the large men wouldn't share the ball, perhaps one of these boys would.

I was ready to pay cash for someone to throw the ball to Ben, but then Ms. Brenda came through the gym. She has known Ben from birth through the child care area and pool. I told her what Ben wanted. Without my prompting, she called over one of the boys and asked him to throw the ball to Ben. He did, happily. Ben went crazy. I mean waving his hands, yelping like he just won the lottery crazy. He threw the ball to the boy immediately.

To Ben's delight, the ten year old Dion offered to do it several more times before he had to leave for home. Once Dion knew that Ben was enjoying himself, he offered to throw the ball to Ben multiple times. It was an emotional night for me - the pain of seeing Ben wanting to be a part of something and then the joy of someone making our night by including him.

Thursday, April 23, 2015

2015 Special Olympics - Track & Field

Ben with his school PT, Vanessa.

Walking to the start line.

Face of an athlete - photograph by brother Sean.

Justin & Daniel, two buddies helping Ben for the day.
Ben received two gold medals for 25m and 10m assisted walk. As per his usual response, he pulled off the medals faster than you can say, "Gold Medalist."

Monday, April 20, 2015

Fans FILLED the Stands!

Photos for now...too tired to write. An awesome experience, again.

Thank you to the tireless photographer. He caught all the right moments.

Wednesday, April 15, 2015


"If you could give one superpower to someone else in your family, what would it be and why?"

This was the question texted to me in early April. A few weeks earlier, I joined a free service that sends a daily text with a question. I was apprehensive about this question because I was not sure what Logan and Sean would say about superpowers and Ben. 

Within seconds of being asked the question, Logan and Sean chose Ben to receive the superpowers. Logan thought Ben would be best served with mind reading abilities so he would know what everyone was thinking.  Sean thought the ability to fix or build anything should be Ben's superpower because he loves Bob the Builder so much. 

I had braced myself for their answers, assuming they would give Ben powers to change him into a typical kid. But they did not - they saw something else that I did not. Leave it to them to be far more perceptive and creative than me. 

My friend and running partner, Ailen Arreaza, works for a new organization called ParentsTogether. ParentsTogether helps parents connect with one another to share resources and support. One service they offer is Q4KIDZ. They send out a question each day to you at whatever time of the day you request in a format you prefer (email, phone text).

I receive a text message at 4pm each day when I am walking to pick up my kids from school. Either on that walk or sometime at dinner, I ask the Q4KIDZ question. Questions are varied, thought-provoking and get family conversations started. We had fun with this one, "What is the first memory that you have?" The answers to some of these questions may surprise you. 

If you are interested in checking out the organization or even signing up for the free Q4KIDZ, check out these links:

Sign up by texting Q4 to 30644 or by going here: 

Sunday, April 12, 2015

Special Olympics Mecklenburg County - on FOX TV

With just one week until Special Olympics Mecklenburg County Opening Ceremonies, the local media is covering the story. Watch one of our athletes and the director of Special Olympics Mecklenburg County talk about the upcoming games:

Tuesday, April 7, 2015

Rebuilding Together of Greater Charlotte

Find out more about the organization coordinating the accessible bathroom being built for Ben:

*Rebuilding Together is a national organization: 
The Rebuilding Together network includes affiliates across 41 states and the District of Columbia. Rebuilding Together’s local affiliates and nearly 100,000 volunteers complete about 10,000 rebuild projects each year. Rebuilding Together served 570,000 people in 2013, putting $86 million of project value back in communities. Rebuilding Together volunteers completed more than 980,000 hours of service in 2013. (Taken from the website.)

Thursday, April 2, 2015

Permit Approved!

We received word today that the plan for the bathroom was approved and a permit was issued. And, literally, as I read the email, the foundation contractor pulled up with equipment and workers.


Missed out on the Bathroom Build? Check out these posts: