Ramping It Up: Children w disabilities, opinions, books

Becoming a Professional Pest

Oh dear, here I go, becoming just the sort of pain in the arse bore I never thought I'd become. Oh, OK, on the bossy opinionated front, maybe it's not that surprising. So far today I have:

- Written a submission to the Therapy Place about why they might change their Board and fix their website

- Written a letter the Childcare Centre about access

- Contacted the Muscular Dystrophy Association to see what support I can get for Miz M -- even though she doesn't have MD. It seems that with an unknown NeuroMuscular Disorder she may be eligible

- Written to the local council about their Park Proposal and the fact my girl can't use any of their new playground stuff (in a shockingly passive aggressive style where I suggested I was sure sure sure they didn't mean it to come across like this and so -- with finger twirlingin a dimple -- where's the real info about inclusion that I must have missed)

- And copied above to the local State member, along with an extra whinge or two.

Sigh.

Something like this:

The Board Thing:

Dear Board Bigwig at the Therapy Place,

For various logistical reasons I was unable to attend the recent Parent Liaison Meetings but, being keen to communicate various thoughts about the organisation, decided to write to you instead.

My two-year-old daughter Morgaine has been a client of The Therapy Place for over a year now, under the “Oh Look We have a Problem” Program (no, they don’t really call it that). My partner Abe and I are extremely happy with the care and therapy she receives, and have also benefited from a range of programs offered to us. I would like to take the opportunity to formally commend the work of physiotherapist X, OT Y, and speech pathologist Z; and to recognise the benefit of courses like the Art Therapy workshop run by Q and J.

Having said that, I also appreciate the opportunity to raise some structural concerns with you: about transparency, involvement, charity models and (in a more functional way) about the role of the website.

In brief:

Representation on the Board:

- Parent/ Carer Representative on Board: Given the number of young clients at The Therapy Place, and that any decisions have a direct impact on them and their carers, I was surprised to find that there is no place for a parent or carer representative on the Board. In the interests of inclusion, feedback, transparency, accountability and – in a very positive sense – to draw upon the experiences and skills of parents, can they have a formal role on the board? Some process would need to be instituted so that parents themselves feel properly and fairly represented (such as an election by parents), which may require changes to the procedures under which the board is constituted.

In addition, given parent/ carer responsibilities, their involvement may need to be constituted differently to that of other Board members: perhaps rotating one year terms?,

I believe these voices need to be heard, and can be heard in a way that is fair, representative and professional. It need not be about an individual parent wielding too much power, nor pushing the rights of their child over others. When done well, it allows for a range of voices and perspectives, for a different type of consultation, and could enrich the organisation.

In addition, it would give weight to what I believe is a prevailing approach to the care of children with disabilities in organisations such as The Therapy Place: that is, fully rounded Family-Centred Practice.

- Person with Disability on the Board: Having made the case for a parent/ carer to be on the board, I have to confess to considerable disquiet about adding another person speaking “for” those with disabilities, given the push over the last few decades to ensure that those with disabilities are able to speak for themselves. Unless I have misread the biographies of members of the board, it seems there is no person with a disability on the board. This surprises me. Surely there are people in the community who could be approached, or even those who have now “graduated” from The Therapy Place themselves?

The website and its audience

- On a conceptual level: It’s not entirely clear who the current The Therapy Place website is for. Is it for clients of the service? Or is it for potential donors to the service? Much of the information presumes the “audience” for the website is a lovely donor, who will help the passive “victims” of a disability. This feeds into a very old model of charity and disability that constitutes the people with disabilities themselves as passive recipients. This, I believe, does a great disservice to the work The Therapy Place actually does: teams of dedicated, intelligent therapists and other providers, working with children and others with disabilities to improve their lives, allow them a place in the world, treat them with dignity and allow them to be active. So why imply otherwise?

- On a practical level: The The Therapy Place website could easily play a more active role in providing information for clients, via intelligently selected links to (eg) government and NGO services available; highly regarded medical and other information sites; support and community groups; disability awareness and activist sites; blogs and other social networking sites that specifically address issues of disability and childhood etc. No doubt members of staff, as well as parents and children themselves, have already found and selected the very best of these sites – but any newcomer is left to flounder, test, search, or never find what they’re looking for. Why reinvent the wheel?

There is an awful lot of information for and about disability available online. Some of it is good; some of it is terrible; and if you’re new to the area, dealing with the life-changing situation of having a child with a disability, it can be confounding. Not only that, the internet is both local, statewide, national and truly international. There will be resources available at all levels. So from Disability Services Queensland to the Inclusion Support Agency; Federal Services to the woman in Austin Texas who writes a blog about her daughter whose experience is just like the experience of the child in the next room, why not better collect and coordinate that information? Presenting and arranging links is not the same as endorsing them, and many organisations do this well.

Finally, I note that the flyer sent out to all of us about the Parent Liaison Meetings says that “interested parents/ carers will be able to meet with the Board during the year”. When and how will this happen, and can it be organised with plenty of lead time, given the logistical challenges faced by so many of us.

Many thanks for the opportunity to approach you: please do not hesitate to contact me if you would like me to clarify any of these thoughts.

 

- Hmmm, must do more work on the whole family centred practice thing, because there's lots of stuff out there, although ti does require evaluation, not to mention finding some of the more recent material

- The Childcare Thingo: no bigger issues there, so not worth copying.

- The Park Thing: Oh yes, let's.

Dear councillor,

I am a New Farm resident with a two year old daughter and a five month old son. I’m a regular user of New Farm Park and, indeed, of all the riverside walkways in the area.

I was very interested to see the proposals for the revamped children’s playground area in NF Park, and very much hope I haven’t left it too late to give feedback on it. The new proposal looks very exciting and creative, with lovely opportunities for imaginative play.

But I must be missing something – and I trust it’s merely the case that the rather schematic style of plan doesn’t provide the full detail. Because as it stands, my daughter, with her disability and being in a mobility device, is almost entirely excluded from the space. Even path access to the new play area, or provision of soft surfaces, don’t seem to be included, making transitions from a pram, mobility device, or wheelchair, rather difficult.

My daughter is only two (and is unlikely to ever walk, crawl, or sit unaided), but already I’ve had to reconcile myself to the fact that older parks give her no opportunity for play, while newer ones may have one or two devices that can be used (eg in Woolcok Park at Red Hill, there’s a hammock-type swing that allows children who can’t walk to be lain on it, for swinging). Even so, with a revamp at New Farm I’d love to see something that includes her, especially given the number of children in mobility devices that I see using the park. (Although paths that allow for easy walking around the whole park, rather than only the small section near the river, would also increase use of the park. As it is, trying to walk the entire park ends with dangerous traversing along the roads. And no, pushing a mobility device through the grass tends not to work.)

I note that there’s considerable good work already done in this area, setting out the principals of accessible and inclusive park design: eg the ACT has just released draft guidelines, so surely there’s no need to ignore these questions?

http://www.tams.act.gov.au/live/about_our_department/community_engagement/community_engagement_activities_and_events/accessible_and_inclusive_playgrounds_in_the_act_-_draft_strategy

But as I say, it may well be that I’m missing crucial details by looking at the schematic plans as they appear on the website.

Could you let me know?

**** and there we have it. I have officially turned into a single-issue bore. Better make sure I write a letter about someting else asap. ***

So perhaps I need to chill out: Or, things that make me go AAAAAARGGGGHHH!!!

So, pregnancy yoga this morning: v good. A bit hot, and lots of vigorous thigh work, but basically, all good. Whereas on Monday night when I also did a preggo yoga class, I spent the first 10 minutes debating whether to tell the two women next to me to shut the fuck up during the "let's all concentrate on being lovely positive womanly women communing with our baby bellies" meditation thingy. Then gave myself a sharp slap and an internal om, and got properly into the swing of it.

Then this morning, was next to a woman who has "pubic symphesis" - which I had long misheard as "pubic synthesis", partly because I suspect that's what half the world calls it and which, along with phrases like "hair's breath" rather than "hair's breadth" have a certain charm about them - and she was clearly fairly uncomfortable. But the nice thing? She was sailing on through and refusing to complain, told me she was feeling great, being positive, except for hardly sleeping and being deeply uncomfortable, which in her sunny way she was refusing to be fussed by.

Then had a great long phone conversation with Holly, an old friend and a colleague, who's feircely intelligent and shockingly witty. Famous, in fact, for summing people up in a few terrible words that you're destined never ever to forget. Like the man she described as knowing about as much as could be written on the leg of a bird . . . with a crayon; or the other who, really, if his brains were gunpowder it'd barely ruffle his hair. And these are the least rude. So anyway, all good.

And THEN in the spirit of being efficient and organised, having just brought in a huge pile of newly washed new baby clothers from Morgaine's collection, ready for Clancy's appearance in the world (we appear to have 800 tiny white singlets; and lots of brightly coloured unisex things), I decided to make a phonecall or two.

Sigh through gritted teeth.

M has a special bathchair shower chair thing, that was partly subsidised through a government scheme. It's worth about $2000 and we paid about $800. Next, we have a special seat/ pram thingy - which is like a wheelchair before she's old enough to work an electronic wheelchair - and we're getting a bit of that subsidised too. It's worth $10 000 and we're paying half of it.

So I rang the supplier and paid over the phone. Then said that, although we had the invoice for our bit of the payment, I needed a copy of the full quote for it and the bathchair, showing the full price, both for our records and for possible use for insurance etc. I'd actually made this same request about 3 times in the past. Oh no, she said, I don't think we're allowed to do that. I smile sweetly but insert an edge of steel into the phone manner, when pointing out that insurance wouldn't work if we could only show half the price; that the person I spoke to last week had promised to send it to me; and that I was more than happy to speak directly to the manager about all this.

aaaaaaaaaaarrrrrrggggghhhhh.

I loathe these circular, illogical, why-does-this-have-to-be-do-hard crapola conversations!

Still, on the grounds that life is full of interesting things to contemplate, and that my personal frustrations are boring as batshit and there really ought to be wider implications for all of this: last week, when I was first chasing up the invoice for the oh-my-god-5K that we have to pay, the woman on the phone said, "so, are you paying this or is someone else?" So I said, um, "we are". And then as the negotiations went on she checked with me a couple more times (really really? you're paying it?): which made me think -- so, who else could pay for it, what the hell are the options, and how how how do you find out about them?

I know she was talking about being supported by a charity or (ick) a church group; a philahtropist or, I don't know, a sausage sizzle organised by your nearest and dearest. And at this stage, we're lucky, and we can pay it. But how do people do the charity thing, what does it mean to go "cap in hand", and why oh why is it still ok that rather than government or other support structures, it's all about charities, do-gooders, the "deserving cripple" and the "kiddie with the picture in the paper"? (Oh look, a much more thought-through and pissed off argument on this very point, much better than anything I could put together in a hurry on a hot day.) I know I know, and I've said it before, we lost the debate a decade or more ago about service provision and welfare here, as more and more services have been tendered out to NGOs, many of whom are church-based charities. I also know there are a lot of websites out there, where people lay their lives and their privacy and their heart-wrenching stories on the line - because they need to raise money. And I suspect, when M is older, we'll know all the options for raising money for a school to get special equipment, for deciding whether or not it's ok for a tobacco company to sponsor a ramp, and we'll become expert at writing grant applications (hey, I work in the media, it shouldn't be too hard to find a "hook" that'll make 'em laugh and make 'em cry, although hopefully I'll manage to keep my ethics intact!).

I've even already had to pull my head in about a company that makes "special needs equipment" beign part of a religious organisation whose ideology I find highly objectionable. Mind you, it's been remarkably difficult to even prove that they're behind the company. And yet it seems they make the best version of this thing we're going to need, fitting all safety standards etc (I'm not going to advertise for them, however, and we haven't trialled it yet - so no names no packdrill!)

Back to the "cap in hand" question, charity support and so on. I wonder what other people's experience of that has been?

But perhaps, without wanting to sound too too churlish, I should end with a song: the phrase "cap in hand", besides conjuring up visions of Andy Capp, takes me to another misquotation. Instead, I find myself hearing the phrase "hand in glove" . . . and what's not to like about a song that says, "hand in glove/ the sun shines out of our behinds"? Ah, the Smiths. Life in a shared house, in Sydney, and suddenly it's the 80s all over again. Quick, where's my eyeliner? So now I'm singing rather than going "aaaaaaaaarrrrggggghhhhh"!