Friday, January 14, 2011

The Highs and Lows of Applying for Waiver Services

One of my grandmother's prized possessions was a dining room suite she was given from her sister. The story goes that it was an expensive antique that her sister didn't have space for after her divorce so she gave it to my grandparents for helping her out. It's four pieces comprised 70% of the space in her dining room. The wood was thick and dark and carved in a gothic style that was completely out of place in her little cape cod home. In addition to the table was a long buffet against one wall and a china cupboard in the corner.

What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.

When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.

Today, my husband I both understand her system. She had a child with special needs.

I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.

I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."

What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.

Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!

(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)


SunflowerStories said...

How frustrating!! I strongly dislike all the paperwork. I had tears in my eyes when I read what the woman said to you on the phone. Glad to see that you have a solution on the horizon.

Mel said...

Oh no. What a nightmare for you. I hate how the system is the hardest part of having a child with special needs often. We are lucky in NZ (which you won't want to hear!) as we have a public health system which is free to all. No medic aid required. Not always able to provide all that we want, but pretty good.
Hoping it all gets sorted soon :)