Wednesday, April 21, 2010

Hmmm.

So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group.


Last year we had an "assessment" with TSC who thought Isla would like their group - which consisted of similarly able children who get together of an afternoon at 3.45pm and do dancing, stretching, games etc.

Sounds great, except that this group is about a 50 minute drive from here, and Isla doesn't finish school until 3pm. I can't imagine how long it would take to get home in peak hour...and I have TAFE too.

I tell them it's not practical for us to get there and we can't make it in time, and I have schooling commitments. She said, "Okay, well if you decide you want to access our service again, you'll need to contact Pathways and wait for the intake".

Seriously.

This is what really shits me about TSC. We're not a priority for them, and I get it, I understand, Isla is mild by their classifications. She is certainly more able than the majority of their patients, but she still has needs...more needs than just a play group.

We're not offered OT or Physio through them. We were offered a speech assessment which Isla "passed" with flying colours. She's never had speech issues {apart from a stuttering problem which went away on it's own accord}. What she needs is Physio and OT, but I can't see a private physio and access TSC. So what choice do I have? Sit around and wait for months for Isla to come up on their lists for review and assessment and not have her seen in the meantime?

I know their resources are stretched. I know they prioritise their services for those who need them most, but we've been dealing with them, and I use the term loosely, since Isla was one. And in that time she's had playgroup a handful of times, where she was either ignored or used as a model, "come on Bob, look at how Isla's knee walking, you do it too!". The therapists didn't spend any time with her...

Annoyed.

And I feel guilty for being annoyed with them. I guess they're doing the best they can, but I hate this feeling that my little girl is falling through the cracks in the system, because by their classifications she's mild, yet compared to a "normal" child, she has increased needs. What am I meant to do?

I have a 5 year old, who can't get in or out of a car on her own. Who can't get herself into a bath. Can't stand up in a shower, can't dress herself. Cant brush her hair. Struggles to brush her teeth. Can't cover herself with a blanket. Struggles to walk up the small step into our house. Can't sit with her legs crossed. Can't get up on to a dining chair. Can't walk more than 100ish metres without falling over. Can't stand still without losing balance and falling over. Who can't control her bladder and bowel {still not sure if this is botox or what's going on}. Who still has problems with dribble because she's tightening up around the jaw....Her last assessment showed her gross motor skills to be under a 2 year old level...

I just wish that she was a priority.



8 comments:

Sarah said...

I couldn't agree more Ally with the way TSC dispenses their services or lack there of.

I also am not a lover of a group setting as there can be so many different levels of CP in the group and you just can't cater for them all in the time slot they give us.

I am sitting here nodding with all the things you mentioned as it really annoys me and the pathways method of services!

I think Isla should be getting everything she needs! If you have the strength I have found talking to the Manager of TSC helps, it has worked wonders for me in the past. Sometimes you have to go over their heads especially if they don't get it.

Ratz said...

Hi,

I can'e even imagine what yo are going through.... Hugs to you Ally and xoxo to little princess

Big brother, Little sister. said...

Hi Ally,
I think it is across the board and not due to being mild as such, but I would be saying that if Isla is entitled to this group then that would be a certain amount of hours so why can that not transfer to a home visit?
I agree with going over their heads and really speaking to the managers about what she is allocated.
FWIW Cooper gets speech. ot and physio and would probably get 1 hour a fortnight all up and those visits are mainly done at Kinder. I use them more as a funding tool rather than hands on stuff too.
Another option is finding a cace worker and getting money so that you can pay for private therapy.
Good luck
Bron

Alison said...

That sux Ally. Even kids with high needs regularly get bumped to the wait list too :(

Isla would be eligible for a health care plan - it would only give you 5 visits to PT or OT or whatever you want, but at least its better than nothing. We use ours for speech which we don't get at all from TSC.

Ally {mtm} said...

I'm so glad I'm not the only one!

Alison, we have an EPC plan that we use for physio, because that's our main therapy, but every 3 weeks at $70+ per session, {not including serial casting at $250 per week} it really adds up!

n0thingbuteverything said...

:-(. I wonder if a NDIS would be the answer to this? It's so crazy that it's such a fractured system.

You're so right that she should be getting much, much more. I don't know how things work in NSW (which again, is silly, it should be the same all over Australia), but are there any other service providers? If not, I'd try what Sarah suggests and go to someone higher in the ranks. It's silly that you should need to though. Hugs to you xo

Ally {mtm} said...

You know Di, you'd think so, but every place I've spoken to has told me we have to access TSC for therapies etc that we're not entitled to anything else!

It's insane.

Anonymous said...

Interesting Sarah, how is your personal progress faring lately