A few months ago I embarked on a mission - a mission to get my child into a day care or nursery school program and have her needs attended to while she's there. Unfortunately, it's turning into Mission Impossible.
Last month I took half a day off of work to meet with our worker from Agency #1. This meeting was to talk about Kasia, her issues and what her specific needs would be in a daycare setting. Also, this meeting was apparently necessary to have her referred to Agency #2, the umbrella agency that provides help and services to children with special needs. And in turn, this referral was required in order to have an assistant provided for Kasia while in her nursery school.
So all was well. We had the meeting and got referred. I chose the nursery school, met with the teacher and was anxiously awaiting Kasia's start date.
Yesterday I decided to call the teacher to find out if they had been able to find and hire an assistant for Kasia. To make a long story short: No. They've not yet been approved by Agency #2 for the funding to do so. When they get approved, then they'll post the job advertisement and start interviewing. (But she's supposed to start in 3 weeks!)
And here's the BEST part!! If they don't get the funding for an assistant, then I or another caregiver will have to accompany Kasia to the nursery school each day and remain the entire time she is there. WHAT??!?? So the deal is, I pay $120/month for two half days per week AND I get to miss work to be there as her unpaid assistant?? That's the most ridiculous thing I've ever heard!
Oddly enough, yesterday I got a letter in the mail from Agency #2 regarding Kasia's referral. Part of it said this:
"The next step would be to meet with you to gather pertinent information about your child."
That's right.... another meeting. A meeting to give the same "pertinent information" that I gave a month ago to our worker from Agency #1. More time off work!
Part of me wants to call this person and ask if I can't just provide the "pertinent information" over the phone, but then I wonder if it would affect the application for funding. Asking for something in person is always much more effective.
This all just makes me crazy! Why do we have two separate agencies that do basically the same things? And why don't they communicate?!? As a parent of a special needs child, I feel like at times, in order to get the services my child requires, I have to endure some pretty absurd things. Retelling the story of Kasia's birth & subsequent genetic diagnosis to no less than 25 doctors, residents, and fellows at Sick Kids is a prime example. It seemed like every time Dino & I would have 2 minutes to breath, someone in a white coat would show up in our room and ask us to tell our story "from the beginning." This feels like the same thing. I don't know if they realize it, but re-living the memories and giving out the details isn't easy. In fact, some days, it's pretty hard on the ol' spirit.
Angry tirade over.
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2 comments:
I was so happy when things seemed to go so smoothly with the nursery school thing. However, I had a nagging feeling that it all seemed too easy. I know our experience with agency #1 was pretty useless and frustrating. We're thinking of putting Bennett in daycare for two mornings a week to get him around other kids and so far it has all seemed too easy. I just don't believe it.
You're right - there seems to be no communication between agencies and it seems no one can give you a straight answer - ever. I don't understand why it has to be such a mess.
Uhhh..I feel your frustration. Keep me up to date.
Hi Kara,
I don't blame you for having a well earned rant! I wonder if those agencies ever get together to see if they are doubling up on the services they are providing. Going through that questioning is almost like an interogation. I have a vision in my mind of them slamming a parent up against a wall and making them repeat over and over what you said. Kara you are strong and don't stop fighting for that beautiful little girl of yours. She deserves the best along with all the other CP children.
Bennett's Grandma
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