Monday, May 19, 2014

Fighting for every service

The process to get Daisy into therapies started when she was in her first foster family. Once she was moved to me I continued that process. It took forever, but she is now receiving occupational therapy, physical therapy and speech therapy each two times per week in my home.

Because these are private therapies Daisy does not qualify through ECI (Early Childhood Interventions) for additional therapies. Medicaid will not pay for both in our area. However, ECI can offer Visual Impairment (VI) services. So, I contacted ECI and asked for an evaluation.

ECI came to my home the first time on March 19, 2014. Miss Daisy (obviously) qualified for this kind of intervention.

A second evaluation was done by ECI on April 3, 2014. I'm not sure why it takes two evaluations. But it does. Each one was handled by different people though and now a case manager has been assigned. This case manager has to come to my home once a month. Daisy also is seen by an occupational therapist once a month. That therapist has a different "title" though for what she's doing in our home. It's technically not OT, even though it looks just like OT in reality. (Special needs becomes one strange world filled with all sorts of people and specialists.)

After the meeting on April 3, paperwork was sent to Daisy's "visual development" eye doctor. This doctor has to fill out a form officially stating that Daisy has visual impairment. It doesn't matter that I've got forms that say she's visually impaired. It doesn't matter that I can prove what eye doctors she's been to. This single sheet of (apparently) very special paper must be filled out.

I will make calls to doctors. I will chase down paperwork. But no one told me that this very special piece of paperwork needed to be signed and was just sitting on someone's desk not getting signed until last week when the ECI case manager made her monthly visit.

And sadly, because said case manager made her visit at 3:00PM on a crazy day, I forgot to write down a note to myself to chase down this missing piece of special paperwork.

I just remembered.

I called the doctor's office.

They told me that they left a message with the case manager that a fee needs to be paid.

I asked how much it was going to cost to get this very special piece of paperwork signed.

The person on the phone had to transfer me to another department.

I had to tell the whole story again.

They put me on hold to look it up.

They are waiting for $50 before they will touch this very special piece of paperwork and officially declare that my baby is visually impaired.

I'm not in a position to immediately fork over my own money for this sort of stuff because I know I won't get paid back. I said thank you and called ECI.

The case manager knew nothing of the required $50 fee. She doesn't know how ECI is to pay this fee. She's going to have to talk to her supervisor and figure things out.

So here we are over six months since my baby was made blind at the hands of another human being. It's been two months since I started the process to get my baby connected with the visual impairment specialist through the school system. And everything is hung up by a $50 fee to fill out some simple piece of (apparently) very special paperwork.

Special needs parenting sucks!

1 comment:

Kristin Reed said...

I'm sorry you have a hard time with ECI. I worked with ECI in the Dallas area for 7 years before moving out of state last year. I absolutely loved my job and always felt it was a privilege getting to work with, and become like family, with all of "my kids". I'm pretty sure the regulations are the same statewide. It is bothering, these extended timelines you are being forced to deal with, at Daisy's expense. If you would like to contact me, feel free. (Some things are better said privately). Your willingness to continue working with a broken system is inspiring. Kristin. Kristinandkelby@gmail[dot]com