A Wall of Paper

That is what stopped me. For years, it was the giant hurdle that, for some reason, I could not make myself work through to get finished with the application for the medicaid waiver.

I had been advised for years to fill out the application for a medicaid waiver. Not only that, but I had gone to a workshop, gleaned valuable information, and understood the system. Multiple times over the years, I picked up that application and got through page one. Sometimes, I could not find the application and would say I needed another. Avoidance was surely a factor. One time, I finally got around to calling for help, but the contact person whose card I had been given no longer worked there. Oh good, I had another excuse. At least I had tried.

Medicaid Waiver Services

That is what I am talking about. I first heard about the medicaid waiver during a transition planning meeting a couple of years before Jessica graduated. Georgia has a good system that other states have tried to model. Georgia’s NOW and COMP waivers became active in 2008 and could provide funding for valuable services for Jess after she graduated. So… why in the world would I wait to apply?

My answer includes avoidance. As parents of special needs children know, rehashing old reports and evaluations can really suck. Filling out questionnaires about their abilities or lack thereof also sucks.

A Daunting Task

My answer also includes procrastination of the daunting task of applying. The application is only 4 pages, so what it the big deal? Page one is a guideline. A checklist of sorts. By the time the application was faxed back, it was 30 pages long. I seemed to have saved every report and paper that ever came home, so I was able to supply copies of most medical information (proof) instead of having to send paper work to all of Jessica’s past physicians to get medical records sent to the state.

Exhaustion

Another thing that impacted how long it took me to apply was being overwhelmed with life. As my nursing career blossomed, my personal life suffered. Being a single parent was challenging to say the least. Nursing was rewarding, stimulating, and exhausting. I was gone from 5:45 a.m. to 8:00 p.m. After taking care of patients all day, I came home to take care of Jess, including helping her with her shower and dressing her for bed. Off days were spent lying on the couch recovering from the pain and physical strain related to my job. There was very little energy left for tackling any projects, including the waiver application.

A Major Wrinkle

Four years of utter craziness ensued. Hannah was in the midst of college planning followed by graduating from high school. Shortly after that, she had a serious and life threatening illness that changed our lives forever. That was followed by me having surgery, then deciding the next year to go back to college for my BSN.

My schedule changed at work. I stopped having the opportunity to work on one of the days that I had care lined up for Jess. I was tired. After Hannah’s illness and my surgery, I was struggling to physically manage what I had previously. I decided to transfer to a nursing position where I would work a job with a regular Monday – Friday schedule. However, to do that I would need routine care for Jess during the day, 5 days a week. I was tired of the constant worry about what I was going to do with Jess while I went to work. I was tired of the worry about her having to be by herself at home.

Oh crap… I should’ve filled out that application. A long time ago.

On Top Of The Paper

How long did it take me to climb over that paper wall? Six… yes 6… years. Really dumb on my part. If I had applied early on, then when I started working and needing care for Jessica, that urgent need could have been addressed so much sooner than it was.

Finally, I not only recruited help to get it done, I begged. Since Jessica’s previous teacher was actively engaged with helping his students apply for medicaid waiver services, I pleaded with him to help me and make sure I didn’t quit this time. (Sometimes, an advocate needs an advocate.) As he did with all students and former students alike, he readily agreed to helping. Having an advocate with a lifetime of experience with disability paperwork and understanding of jargon and requirements was immensely helpful. FINALLY! We got it done.

The application was faxed May 2012. Then, the waiting began.