Wednesday, January 27, 2010

Lyme Disease & Disability in Kansas

We did it! We FINALLY got approved for disability! It took almost exactly THREE YEARS to get approved and will take another 6-8 weeks before we get any money but HALLELUJAH we finally got disability benefits!!!

So, in our fight for disability our time line looks like this...
• January 2006- Scott is no longer able to work.
• March 2006- Scott was diagnosed with Lyme Disease instead of MS
• March 2007- We filed for disability.
• July 2007- Hired a disability rep.
• July 2007- Off The Record request thru ODAR.
• September 2007- 2nd Off The Record request thru ODAR.
• October 2007- Found a local LD doctor.
• December 2007- Started 2 a day IV treatments.
• June(ish) 2008- 3rd Off The Record request thru ODAR.
• July 2008- Got our KS rep involved in our disability case.
• October 2008- Fired worthless disability rep and hired a new one from KC.
• December 2008- Scott's 1 year anniversary at the IV clinic
• May 2009- We received a letter from SS saying we finally had a hearing for July 9th.
• July 2009- 1st disability hearing. The judge decided she needed more info. on LD so she set up another hearing for August. 19th.
• August 2009- 2nd disability hearing with a medical expert and a vocational expert. We are told that we will have a decision within 6-8 weeks.
• October 2009- We get a letter saying another hearing has been set and will be the day before Thanksgiving. The next week we got a call from our lawyer saying the judge had called her and said we didn't need another hearing because she had made her decision. We are told it would take 4 weeks to get the decision.
• November 2009- We called our lawyer and were told that our decision had to be sent to a Decision Writer who would write up the judge's decision and it should be sent any day.
• December 2009- We called our lawyer again, right before Christmas and they in turn called ODAR. ODAR said that they would try and mail our decision before Christmas...
• January 5, 2010- Our letter was started.....
• January 14, 2010- Our letter arrived in the mail and Scott was too nervous to open the letter so he had me do it. From this point we had been waiting for this decision for 2 months shy of 3 years but it has been 4 years since he was able to work. The letter is 16 pages long and discusses everything....but the most important part is that the judge gave us a partially favorable decision. It is partially favorable because instead of back dating the disability to the date we filed, she made it retroactive to Oct. of 2007 when we had more lab tests and evidence of the illness.

That brings us to today, Jan. 28th. We called the SS office the week we got our letter and were told that it will take 6-8 weeks for the decision to be entered and before we would get our first monthly all in all it WILL BE 3 full years! HOLY COW! No wonder families end up losing everything during the process! Kansas is one of the worst states when it comes to pushing along disability cases and the average backlog is 15,000! It took 5 months for our decision to be written up, submitted and sent to us. THAT IS BEYOND RIDICULOUS!!! We have also heard that it will take about 6 months for our backpay to be released so we are anxiously awaiting that check...where we can finally pay off the debt we have been unable to pay off for the past 3 years.

Now that we have finally been approved for disability, I am considering adding more posts about Scott to our family blog. He feels vindicated and justified with his new title and knows it is one step closer to getting back to zero. He no longer needs to defend his illness to those who don't believe him because the State of Kansas has agreed with him and approved his benefits. He no longer feels the need to prove to them that yes, even with good moments, he is still disabled. To celebrate this GIGANTIC victory, we made him a red velvet cake with an apricot sour cream frosting. The boys lit the sparkler candles and we sang, "Happy Disability To You, Happy Disability To You, Happy Disability Dear Daddy, Happy Disability To You!" It was a sweet little moment in a long battle for Health, Disability and Credibility...


  1. I don't often comment, but wanted to on this one. Wow. Three years...How wonderful for Scott and you...

  2. Thanks Renee. It was such a long, hard road and it is hard to believe we finally got it! It is truly frustrating to be sick and to have to fight for your rights...most lymies are too sick to do that. I look forward to being able to move on from this battle...


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