Friday, August 20, 2010

The System

Holy moly, is it really this difficult to get services?

We never had problems in Charlottesville. Lilly received physical therapy from the time she was 3 weeks old; speech and ot regularly after a year. The system worked with us, they looked out for Lilly's needs. Sure, we're involved parents, but they explained things to us, made sure Lilly had access to the therapies she needed.

This was one area that we thought New Zealand really lacked. Actually, had we been residents or had a 2 year work visa, Lilly would have gotten services there. (More accurately, they most likely would not have allowed us to have a 2 year work visa and access to the system because, as one government employee told us, Lilly would be "a drain on their society." Nice.) But since we were only there for a year, all of Lilly's therapies were paid by us out of pocket. Financially, that sucked. But as far as us making sure Lilly received what she needed, it was great - we were in control of making sure Lilly received speech and PT once a week, and we chose the therapists that we liked the best.

To be honest? I can't say anything about NY therapies. Because it is so difficult to access the system. Therapies work best when they are regular. A year ago, when we knew we were moving here, we started contacting the NY Department of Ed to figure out how to get services and if there was a public preschool program for Lilly. According to the 10+ people we talked to, we got the following answers: there were no public preschool options; they couldn't talk to us before we had an address; they couldn't talk to us after we had a NY address because we had to live here first; and there were public preschool options but that Lilly wouldn't qualify or be bright enough for them and they would be full anyhow. One person told us that the IEP process for NY would go much quicker if came with an IEP from Virginia that they would use so she wouldn't have to get evaluated again here. Another person told us there was no lag time in getting services, NY education system was open all summer and she'd get services fairly quickly.

We moved here at the end of June. July 6, I started calling the Board of Ed again to figure out how to get the process started. (Their website is more than confusing and there is a total lack of information for preschool aged kids like Lilly.) July 7 I faxed the appropriate person to formally request the IEP process. A few days later I called to check. They said to fax it again because they couldn't find it. A few days later, I called again to check, and they said they had mailed something to me. I received it a few days after that, and there was an information packet. There was a list of 200 evaluation centers that could possibly see Lilly; it was up to me to start calling to see who wanted to work with us. I started by finding locations near us, and left messages at 10 evaluation centers. A couple of them don't do evaluations even though they're on the list. The rest never called back. So I asked Lilly's daycare if they had any recommendations of places that would do an evaluation. They gave me a few names, and the first one said they'd take us on.

A week later that therapy center set up an appointment with Lilly with a psychologist. I was not impressed with her; I'm hoping she is relatively new to working with kids and that her skills improve. (Perhaps needs some kind of therapy herself?) Then for the next week, we also saw a physical therapist, special education teacher, occupational therapist, and speech therapist. They evaluated every possible area of Lilly. It's been almost 2 weeks since our last evaluation. Apparently I should be receiving something in the mail soon with the actual evaluations. I just spoke with the evaluation center again to figure out what happens next. They said there is a meeting on September 28 with the department of education to discuss the evaluations, the iep's, the goals, and what services Lilly may receive. And then we can start the process of getting those into place.

Seriously? Three months to the day after we move to NY, we can finally figure out what services she'll get? And then sometime after that they start?

Furthermore, apparently it is wrong that there are no public preschool programs in the area. We picked a daycare based on the fact that there were no other options, and in NYC a normal daycare costs $25,000 on average. We are paying this astronomical cost because we know Lilly will benefit from being in a preschool daycare, we're only in NYC for a year, and we both work full time. But now apparently there are public (free) options? Except - get this - because we've "waited so long" they are all full, or will be full by the time of our meeting at the end of September.

Honestly? Not so impressed with the NY education system as it relates to my child. Virginia may not have tons of resources or money in their education system, but at least they provided access in a timely manner. And NZ didn't care about my child, but at least we knew that in advance and were able to privately start therapies within days of arriving there.

On the bright side, Lilly is doing great. She is recognizing letters EVERYWHERE - in books, on signs, etc. She loves spotting an E, D, A, B, L, F, M, H, I, Y, etc. She knows words that begin with each letter from A to Z. She can sign every letter. I am so proud of her.

She's loving her friends at school too. A few days ago Lilly was sitting on a big block thing, as was a girl in front of her, and they were trying to push them around the playground while sitting on them. The girl said to me: "Look, I'm teaching Lilly how to ride a horsey." Then Lilly and her friend got up, and another little girl joined them, and they all ran around the playground together, dancing and playing.

She may not be receiving therapies, but she's in a good school, she has involved and loving parents, and she is definitely thriving. I love my girl!

1 comment:

Anonymous said...

It sounds so disorganized! You and I have talked about this before, but I feel really sorry for the people who don't have the time and resources to research and advocate for their children, because I'm sure many of them give up and their kids miss out on the important early intervention that they need.