Ramping It Up: Children w disabilities, opinions, books

If I had to do a Productivity Commission assessment of my life . . .

I'm attempting to be brisk and organised and productive, while still feeling the impact of a medical procedure yesterday that required sedation. A non-glamorous, not at all worrying, spare everyone the details, type medical procedure. Suffice to say I had to fast for days, drink litre after litre of water, and miraculously gained a couple of kilos in the process. Bugger it.

So it's a quiet day of answering emails, sending off requests, trying to con a library into scanning my thesis into TROVE (I've had one of those inquiries from OS about it that's both exhilerating and exhausting, as I'd have to explain why I can't just send him off an article he can use because - well - didn't quite get around to publishing much of it etc etc), chasing up lost super (blah), finding medicare claims, chucking things out (maybe), and discovering - yet again - that disability services stuff crosses state and federal boundaries in annoying ways.

Miz M has a Qld Taxi Subsidy Scheme card, which only involved filling in 82 pages worth of forms and getting supporting documentation from two different places saying no, really, can't sit in a regular chair, yes uses a mobility device, no can't walk at all etc etc. From memory, that was the same week I filled in another set of forms for a "Companion Card", and yet another for a disabled parking permit. All done, all good, all being used. But we're going to Sydney in October, for a week, and will need to use accessible taxis all over the place. Not to mention reinventing the wheel(chair) once again with an airline; making requests about taking the chair to the door (again), getting lovely and positive responses from the "Special Handling" gang (again), while knowing that the people at check-in will be flummoxed, confused, unclear about the process, and we'll have to give her life story all over again while I try to keep my irritation and on-the-verge-of-tears response under control (again) while Abe tells me to stay calm (again).

Doesn't sound cynical, does it?

Anyway, realised that the Taxi Subsidy Scheme is state-based, so I have to put a request (in writing, here we go) for a book of vouchers to use interstate.

No big deal; no wish to whinge excessively; 2 minutes on the phone plus 2 minutes to write an email. (The email to the Special Handling section of the airline takes much longer, as I work out how to be charming but assertive at the same time. Crossing out all my "maybes" and "perhaps" es; replacing them with "we require" and "you will" and "as you know" etc.)

But why, the fuck, don't these systems cross state lines?

OK, it's about funding and jurisdiction and which things are dealt with by the states, which by the Commonwealth. So what it comes down to? Blame Henry Parkes and Alfred Deakin and George Reid and whatsit Griffiths? Blame the constitution and 1901? Who, I'm quite sure, gave not a thought to care of people with disabilities falling between cracks in the health and welfare system . . . although, as they stood around pompously in Melbourne in 1901, Deakin daydreaming about spiritualism and getting back into his cossies down the coast, and George Reid thinking up another bon mot, they may well have known people with disabilities. After all, there was a contingent or two off at the Boer War or in the Sudan. There were epidemics everywhere. There were rats in Sydney; there was polio, there was typhoid, there were children being blinded by measles. Still, they didn't really think the Commonwealth govt would have much to do; they didn't even think it'd have to be a full-time government.

So I'm not sure we can blame the constitution makers and 1901. (Although Bob Katter and George Reid would've enjoyed yelling at each other over free trade, protectionism and tariffs. Sugar and the north. City versus country.)

But hang on, people, we've had over a century to sort some of this stuff out.

The Productivity Commission is dealing with some of it right now. It was the week before the election, when the latest round of submissions into "Disability Care and Support" were due. Life was busy, of course, but I knew I wouldn't forgive myself if I didn't write something. So I wrote about our girl, about that Difficult First Year, about the lack of communication and knowledge between different sectors, about feeling set adrift when community health nurses shrugged their shoulders and said, basically, "we have no idea what to do next". About the need for investment in the communicaiton and knowledge economies. About the need for a National Disability Insurance Scheme. Tried to draw out the implications of our own very limited experience to a wider, systemic, problem. Tried to include personal stories as well as pleas for equality, rights, love, education, access, equipment, fairness. Then just stopped, after a while, because it became rather draining. Wanted to make an impact by telling a personal story then drawing out the implications, but made myself teary every time I reread the damn thing to edit it (still had a really stupid typo in the final version, that made at least one sentence completely nonsensical). Sent it off, on the very last day (of course), exactly one week before the election. Was sitting up here, sending off copies to every politician I could think of (state member, federal member, state minister for disabilities, fed parlt secretary, The Therapy Place, Miz M's school) when I didn't hear my mobile phone ring. New phone, dammit, my ear wasn't attuned. And what do you know, it was Bill Shorten, while he was still Parliamentary Secretary, with a warm and intelligent message. Damn, I wish I'd heard that phone and spoken to him instead. Clever politicing, too, I have to say, so close to an election. Haven't got a response at all from my state member, which still irritates me (what is the point of being a rusted on Labor supporter if they Disappoint You!!!!)

But Oh. My. Gawd. You should see the submissions to the inquiry. There are over 500 up there to look at, but I don't quite have the strength this morning to delve back into them. They can wrench your heart out; and can also make you sit up straighter for the strength of analysis and the power of the stories. for their politics. Some, of course, are less than fascinating. But most, holy shit, batman. There are individual submissions that have been written in a hurry by people with not much time, talking about decades of care for their children. People writing angrily and proudly and stroppily on their own behalf, about their lives and their rights. Organisations talking about what they do and how they do it. People whose stories make you want to weep, for the injustice of inadequate support, money, equipment and for being treated so badly. For lack of resources in rural Australia. For lack of support in the middle of cities. And then there are clever, analytical, proposals from women's organisations taking on the gendered aspects of care. And there are people and organisations whose solutions you can flat-out disagree with.

But the stories the stories. Such a reminder of the power of ordinary lives and experiences. And no, it's not all about tragedy and despair; but it's certainly about a lack of equality and a desparate need for change.

There are 537 submissions right here.

And if those commisisoners decide to look outside the submission, they'll find grist to their changing-the-system mill everywhere they look. They'd find it in Pen's stories who, with aplomb and warmth, finds herself travelling from Canberra to Sydney for her boy; they'd find it in the story of Moo's apparent invisibility, and the anger and vulnerability that exposed. They'd find many things to think about via Miz Lauredhel and the Hoyden's About Town, who will not be silenced thank you very much.

When the Wheel falls off the Wheelchair: Can you build a raft with a ramp?

I drove up to the Children's Hospital again this morning, but not for the usual reason. Morgaine is fine, and has been out of hospital for ten days now (twelve days in, five of them in Intensive Care) and was in the backseat giggling with her brother, who was wont to make a fuss. I was driving around in circles, trying to find a park near one of those places where parents from out of town can stay while their children are wrangled and poked and labelled and examined time and again. Finally, I just parked illegally and tried to make contact with this woman I'd never met before. A woman I had been put in contact with just last week, by The Therapy Place, as she was contemplating the same type of Special Needs Car Seat we have for Miz M. Fine, I said, give her my number; happy to talk. 

Happy may not be the right word for it. 

By the end of that phone conversation, I realised she needed something much more than I could provide. She needed a whole network and professional advice; she needed money; she needed decent equipment; she needed a partner who hadn't upped and left in the face of their daughter's disorder; she needed medical advice; she needed not to live so far away; she needed help with a child who makes M look strong in comparison. Miz M can now hold her head up for 15 seconds at a time sometimes. I'd been celebrating that, and then realised it was a tiny tiny incremental shift and still didn't compare with any usual range of "normal". Well, this girl can't hold her head up at all. So fragile; so lacking in strength; so terribly in need of modified equipment.

But I turned up, and showed her what we had and how it worked. The footpath was beginning to vibrate under my feet with her level of stress. It wasn't so much that she was about to cry - eyes fill with tears regularly in this world of ours - as that she was about to disintegrate before my eyes. Bits of her were spitting out and edging apart at the seams, for lack of knowing what to do next. She'd clearly pinned some hope on me turning up with a solution . . . but it's not quite right. I suggested she contact Technical Aid for the Disabled, to see if they could do the modifications for her, but the despair hardly allowed her to know where to begin. And she hadn't heard of many of the organisations or possibilities or lobbying or hustling out there.

And then one of the wheels fell off her daughter's wheelchair. She nearly lost it. What if we'd been going down that hill; why didn't they fix it yesterday; I'm going to raise hell with someone very soon. I hope she raises hell with the right place, rather than spitting fire indiscriminately.

This woman needs the National Disability Insurance Scheme - and, I'd suggest, a good organisational support structure that could ask some of the questions she doesn't yet know to ask.

And then here's my ethical dilemma: the question of breeching trust. I contacted the head of the social work section of the Therapy Place, and left a message saying that I thought this woman needed more help. Urgently. Partly, I know what she needs is a friend to debrief with, a person in a similar situation to talk to, and I don't think I can be that person. I don't want to be that person - there's the selfish bit. I recognise the jangly need; the awfulness of not getting answers; the perplexity of not knowing how to ask the right questions . . . but I know my strategies are different. But I also know I'm not alone the way she is. On any cold night, in any moment of frustration and fear and anger I not only have Abe who wraps himself around me, who I can and do turn to; I have a liferaft of friends. A liferaft, not just a raft. 

This woman needs a raft. With an outboard motor, and maybe a little house built on top of it, filled with cups of tea, books, and a computer filled with useful bookmarks. And either a how-to guide or a flat pack version of it, that she can build for herself. How's that for an overworked Ikea-ish metaphor.

Lunches, Disability Insurance Schemes and (of course) Deadlines

I was called "dear" by a young doctor at the Children's Hospital yesterday ("What was your name again, dear?") and it was all I could do not to hiss at her. Of course, hissing "Don't patronise me, Girlie" would defeat the purpose, and I even pondered mentioning it to her colleague on the phone this morning (do you reckon you could ask your intern . . .) but decided against it. It's like the no-brains-at-all-apprentice where I get my hair cut, who calls me Dear and Doll. I think he's eleven. It irritates me - shits me to tears - but there's no point "making a federal case" of it, as it were. (Being Australian, methinks the line, "There's no point taking it to the High Court" won't ever really slip into popular culture the way that particular Americanism has.)

So, was at the Children's Hospital yesterday with Clancy for a change, in the interests of MCAD. He was sick, had a temperature, and was refusing to eat. With any other kid, you'd give them lots of water, and it'd be fine. But no, potential (but not actual) dramas at every turn. Heightened by a bit of strategic and v loud dustbusting by Abe while I was having the obligatory phone confab with the hospital (yep, that's domesticity for ya). So had to spend a few hours in Emergency while they decided whether an IV drip or a naso-gastric tube was going to be needed, and instead we've added yet another potion/ tin/ kg of stuff to carry with us: "PolyJoule", like water, but with calories and no taste.

And joy oh joy, I got to meet the patronising young doctor.

But enough, that's boring. Also headed out on Sunday to do some "disabonding", to meet up with a bunch of women who also have small children with disabilities. I've been invited along so many times it was becoming Bad Form not to go. Ambivalent? Oh yes. The old club you never intended to join thing. And of course of course, it was terrific and interesting and sobering all at once. A woman whose child has a very rare disorder (less than 20 incidences in the whole of Australia), and who spoke blithely of weekly treatments, portacaths, surgery, and bits of cartilege where bone should be. Her daughter had to wear a metal "halo" for a year, but can now hold her head up, speak and even (very recently) walk. Another two whose children both have rare disorders, involving limited movement, twisted limbs, and endless hospital visits. One told the story of her son's birth, which was so traumatic you could see her distress and a certain amount of steel even as she spoke of it. The woman next to her combined matter-of-fact descriptions of major surgery with any number of little stories revealing what a strong-willed character her daughter is, hurling toys and dolls out of her bed, as no-one but no-one takes space or attention away from her own little self. Another whose daughter had a week where she spoke a few words, but has not managed it since. The final woman had a son with ASD, and seemed a little over-awed by the stories of physical disability, and didn't quite know where to place herself.

And in case that sounds too serious for words: pinot gris; crispy barramundi on a lemony risotto; and a desert that added about 3 kg just by the end of lunch. (I know about healthy weight ranges, and at least 8 kg are supposed to go by Christmas, in the interests of living a long, happy and healthy life with better frocks. I believe a stronger strength of will is required.)

Nobody was whinging in this group, I'd have to say, but there were once again stories about equipment, and organisation, and medical procedures, and practicality - with the sort of wicked laughter you can most easily share with others in the same predicament. So of course I had all that in mind when hearing Rhonda Galbally talking about the National Disability Insurance Scheme on RN. I'd been hearing about the scheme itself for a while, but what's new is the research, and a report on the experience of families with disabilities in Australia. I haven't read it all  yet, and yes it's sobering.

The thing I can't quite get my head around, and which Galbally mentioned, was the problem with education and the way in which both mainstream and special schools are failing those who need them. I've heard and read many critiques from people who've been shunted into special schools and ran away screaming (And I know there's at least one PhD underway on that right now), but these are from people who academically went gang-busters and for whom mainstream schooling worked very well. What I'm not clear on is why, if special schools are part of the regular, public schooling system, they're not just as accountable as every other part of the education system. Because while I do appreciate the notions of inclusion, it's not clear to me whether that will work for Miz M, given her high level of physical needs (although I know these should be dealt with in a regular school, with the right level of support), and given the likelihood she won't be able to speak, and even the likelihood (although I think the jury's still out on this) that she also has an intellectual disability. Shouldn't the Special Schools be just as good, if not better, at making sure these kids get a good education, that does open them up intellectually and creatively, that isn't about sticking them in either physical or metaphoric beanbags in the corner? It must not must not be a fait accompli that these schools are below par. And the deputy principal at the school I've spoken to, seemed pretty clear on why meaningful pedagogical outcomes are possible, but I gather there are no properly thoguht through curricula for special schools. Not good enough, comrades, so I wonder who I appraoch about that, and whether I should start with Miz Galbally herself and ask her what she thinks?

Although there's clearly lobbying around the actual National Disability insurance Scheme, too. 

Meanwhile, though, there's the question of how we all cope, stay together, stay positive, or - depending on how you look at it - don't fall apart. And I've recently glanced at a new report on resilience and families of children with disabilities, but have not had a chance to absorb it or respond to it. Some people are sick of the word "resilience", and have been Ann Deveson'd out, maybe, but as a concept, I still get it. At least, get why it matters. I've never thought the bounce-back-ability definition was quite nuanced enough though, so maybe it's time for a new catchphrase. But they go in and out of fashion, don't they. ("Not Happy, Jan" - a response to any moment of being patronised, ignored, irritated. Where would we be without it.)

Meanwhile, I know I'd be more positive and bouncier than an india-rubber ball (as King John said, in an A A Milne poem) if I was able to do some decent, sweaty, muscle-burning, cardio exercise. And if I could deal with my cheese addiction.

Hmmmmmm: insert literary and cheesy segue, connecting dairy to court of Henry Vlll and the fabulously interesting Thomas Cromwell. OK, if we take it as a given that I've done that successfully: So, Hilary Mantel won the Booker! I really enjoyed reading this brick-sized book, but haven't as yet read anything else on the short list. (Love A S Byatt's Possession, but wasn't wild about any others, which makes me nervous of the Children's Book; against all odds have not converted to Coatzee, but really should give that a go; like Sarah Waters, but this one doesn't sound as successful; which means I have the one about the 1840s asylum, and the one about Czechoslavakia in my sights . . .)

Time to head off without hissing at anyone, and to see if I can manage the rest of the week without being called "Dear". I'm not quite at the feirce "I"m not your dear-anything" phrase, which I have a feeling my mum used to occasionally use, in her flea-in-your-ear moments, but am prepared to build up to it. I used to know a woman at uni whose dog was called "Girlie", which was short for "Don't Call me Girlie".

So, Don't Call me Girlie, m'dear.

PS Adelaide, thanks for your comments. Yes, there are great pieces of equipment out there, just not at every park. There are even great swings with enough head support etc, but our v small courtyard really is small, even for Australia. No grass, no room to swing a cat. And no, slings don't work for her, as no head control means she doesn't have the strength to be supported in them (and I carry Clancy on my back while she's in her mobility thingo). There are great chairs and seats out there, a no of which we have - and allow for good interactions at home or at childcare etc. I"m probably being unrealistic in wanting something easy and portable.

And I said to her, Have You Got a Problem? The Question of Disclosure

I went off to a "My Time" support group thing today, for "carers" of children with disabilities. This is a group that  has, in the past, sometimes annoyed me for its general "oh, you have milk in your tea! So do I!!" level of discussion, which then becomes real and connected in the last five minutes as people are haring off to meet their various deadlines. Anyway, today was interesting and strangely moving in the way these things often are. Also, having an opinionated-pain-in-the-arse personality style (while pretending to be "lovely") I had sent an email to the facilitator saying, well, I'd find this useful if it dealt with issues like x, y, z and q. Q being "how do you talk to other people about your kids' disability" aka, the politics of disclosure.

And whadayaknow it came up today.

In some ways, of course, there's no guide for this. There's no right way and nothing can save you from the crack-in-the-voice moment, or even the startle-a-stranger-and-leave-them gasping moments, but I think I"m getting better at it, and better at deciding when to say nothing.

But there was a woman there who I'd met only once before, on her very first time of attending anything like this. She was so raw the pinkness shone through her well armoured exterior (just to mix a metaphor or two but, really . . .). Her son has a condition that's terminal. He's three. And these are the first things she lets you know about him. He's also quite a happy wee boy, who likes puzzles, seems pretty relaxed in a room with strangers, and knew how to keep an eye out for the tube attached to his gastro button feeder contraption. And the first time I met her, we were having the regulation Resilience conversation. How to increase your resilience; what you might do; strategies and so on. We also talked about what we did to keep ourselves sane.

And she looked at all of us, firmly and with conviction, and said:

I Don't Know How to Be Happy.

I can't, she said, think of anything I'd like to do. I don't have any time to myself. I can't even remember being happy.

This rocked me back on my heels.

So this morning, she seemed a bit more positive at least. She'd found something she liked to do and had time to do for 2 hours on a Tuesday afternoon or something equally grim (grim because it was only two hours; and the activity sounded pretty dire to me, too, but I won't go into that as it'll make me sound like an up-myself snob, tra la). But I was also struck by her worldview as we talked about disclosure and talking about your child. She tells everyone, she says, and tells them the name of the disease, and that it's terminal . . . in case one of those people turned out to be a doctor or scientist who might find a cure. And related to that, was a presumption that most people were judging her, were unkind and unsympathetic, and if they asked a question well hey it served them right if they were startled by the answer. So everywhere she went, it seemed, she was looking for both opposition and salvation. Opposition and salvation, I think there's a lot there to tease out, if I had half a chance. Her son was standing up in a foodhall recently, with his feeding contraption, and a woman was "glaring" at them. And so, she said, I said to her Have You Got a Problem? And she said "fuck off" and I said and she said and it all sounded deeply aggressive and unpleasant and confronting.

And, she said, I don't cry any more. I'm hardened. Again, perhaps raw and scraped and exposed, rather; perhaps a carapace of pain.

The ground rules for these types of groups, though, tend to be that you don't find easy solutions or presume to have answers. Suggestions and exchanges and stories, sure. So none of us could say, "Maybe the other woman wasn't juding you at all" or "give yourself a break, don't expose yourself by telling everyone and, really, the person you miss won't be the genius who could find the cure". So we don't say any of that.

The other woman who was there had a curiously flat and passive manner, but she really warmed up. Her child is eight, whereas the rest of us had 2 or 3 year olds; and she was clearly exhausted and worn down . . . but then revealed all these clever strategies. Things she'd done and said; what she'd resolved. The socialworker facilitating tried to say as much to this woman, and she was such a worn down little rabbit that she thought she was being criticised rather than complemented.

So the session left me feeling tenderly towards these comrades-in-arms, even though each of them aren't at all the sort of people I'd hang out with. I tried to raise the question of how we do disclosure so we're not taking over and talking for our kids, but given their ages and inability to speak for themselves it's a bit tricky; and more and more it seems a question the "carer" community is scared of dealing with. But I can't help but think about all the disability-activism about autonomy and identity, and what this might mean for how you do it well as a parent to allow for that. How the hell do I honour that impulse, when Morgaine will be totally dependant on us, very likely, forever? Again again again I do hope she might be able to speak, or sign, or have some system of communication one day. Even if she can't sit or stand or walk, I hope she can one day tell us to bugger off and leave her alone; or say that she wants to do something; or let us know what she things.

Then again, as she stroked my arm while I was feeding her, I like to think she was showing me some of what she was thinking, and feeling. And she certainly knows how to laugh. Thinking of which, my half an hour is up (Clancy is asleep on my back, which makes me feel a little like an earnest cliche), and I need to go and get my girl from childcare. I know the inclusion impulse is working well, because she came home the other day with finger-shaped bruises on her calves, and an impressive bite mark. Yay, for the democratic pipsqueakery of the playground. Snort.

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. ***