Public Address | Cafe | Access: It’s just a bout of Chronic Sorrow

Rosemary McDonald

Wed, 03 Jun 2015 20:24:28 +1200

And encrypt everything.

Right there...you lost me...beyond my ken...this fifty five year old brain reaches overload. But....I was instructed, rather forcefully by the Young People, NOT to put personal stuff through the interweb .

The hints re passwords...very handy idea. Thank you...as the whole password thing...

Moz

Wed, 03 Jun 2015 11:04:36 +1200

Definite yes on screen shots as well as saving web pages for offline viewing. Internet archives only go so far.

All this cloak and dagger shit is ridiculous though when we are talking about how our government responds to the needs of vulnerable citizens.

Very much so. This isn't the…

Rosemary McDonald

Tue, 02 Jun 2015 13:42:33 +1200

http://www.stuff.co.nz/manawatu-standard/news/69032551/child-with-no-fear-died-after-falling-into-water-tank-says-coroner

A coroner has refused to blame the death of an autistic child on poor supervision by adults, saying people cannot watch children “like hawks”.

I don’t know.

Four adults in the house….known risk…..so very, very sad.

Marc C

Mon, 01 Jun 2015 23:12:54 +1200

You are not alone with those experiences, Rosemary. And re "keeping copies", you are also not alone. Much seems to vanish from certain websites, particularly such as WINZ and ACC, over time, and that is for reasons we know.

I know of persons having been sent OIA replies, by Ministries,…

Rosemary McDonald

Mon, 01 Jun 2015 08:45:15 +1200

My days as both may be numbered Marc C. I am not techno savvy by any means...but I do have a nose...so to speak. Unfortunately, I have gone looking for treasure online and have on more than one occasion received quite forceful "you do NOT have access to these files"…

Marc C

Mon, 01 Jun 2015 00:52:01 +1200

Besides of being a strong, dedicated advocate, you are also a treasure hunter, I notice.

Thanks for that invaluable cached information and link!

Sacha

Mon, 01 Jun 2015 00:19:01 +1200

sure. guess my personal test is if someone wants to know about a topic, where are they more likely to look for it? no right answers.

Rosemary McDonald

Sun, 31 May 2015 23:55:03 +1200

Not questioning, Sacha, just expressing sorrow at the wickedness of it all.

Is it acceptable to use these threads to keep the community informed as to what is going on?

And to perhaps share some of our personal experiences that other' s may relate to?

The two threads do seemed…

Sacha

Sun, 31 May 2015 23:39:46 +1200

I don't want to overwhelm the personal significance with even more policy stuff

Rosemary McDonald

Sun, 31 May 2015 23:20:19 +1200

Difficult choice.

"Sorrow" or "Wicked"

Hmmm

Sacha

Sun, 31 May 2015 22:46:32 +1200

I've posted a link about this on the 'wicked problem' thread, which seems more related.

Rosemary McDonald

Sun, 31 May 2015 21:04:49 +1200

"22. In general, social bonds are showing promise as a vehicle for improving results and encouraging investments in preventive services (see Appendix 1 for examples).However, international experience cautions that the model is relatively complex and resource intensive to establish."

but, don't panic, because...

"Pilot services will need to be non-essential…

Rosemary McDonald

Sun, 31 May 2015 20:56:41 +1200

http://webcache.googleusercontent.com/search?q=cache:hpWNMumOLK4J:www.health.govt.nz/system/files/documents/pages/social_bonds_cabinet_paper_redactedv1.pdf+&cd=4&hl=en&ct=clnk&gl=nz

Not sure of the date...buy signed by T Ryall.

Marc C

Sun, 31 May 2015 18:50:20 +1200

If you want to get an idea of what is coming, check this out, just leading the news on TV One tonight:

"Government to issue social bonds for mental health services"
http://tvnz.co.nz/national-news/government-issue-social-bonds-mental-health-services-6327111

A couple of years ago the Herald reported this, from leaked papers obtained from MSD:
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10893823

Clearly the…

Christine Peet

Sun, 31 May 2015 16:34:30 +1200

I accidentally logged in as my partner… but anyway

Seriously, a mate with considerable hands on experience with disability was turned down for a job at a NASC as she was considered to be too ‘sympathetic’.

And yet as the case is with my “Service Co-ordinator” has no experience with…

Justin Ryan

Sun, 31 May 2015 16:26:43 +1200

Hilary Stace

Sat, 30 May 2015 12:51:32 +1200

Scary stuff. No service or NGO is safe. Will have negative consequences on NZers.

Marc C

Fri, 29 May 2015 23:06:31 +1200

So why is the government destroying this organisation and leaving vulnerable people stranded? There just aren’t other organisations out there with the capacity to suddenly pick up the workload or build the relationships. I don’t understand.

Well, when even a former Deputy Chief Executive of MSD writes a critical commentary…

Hilary Stace

Fri, 29 May 2015 15:49:27 +1200

Such a sad story. Why did he go home from school early? Was it because the school wouldn't allow him to stay the full day?

Rosemary McDonald

Fri, 29 May 2015 12:42:26 +1200

And today....

http://www.stuff.co.nz/the-press/news/68945247/autistic-boy-dies-from-head-injuries-homicide-probe-launched

Rosemary McDonald

Tue, 26 May 2015 12:41:22 +1200

More to this than meets the eye...as usual.

http://www.productivity.govt.nz/sites/default/files/sub-social-services-56-relationships-aotearoa-577Kb.pdf

http://www.scoop.co.nz/stories/PO1505/S00232/relationships-aotearoa-our-story-filling-in-the-gaps.htm

http://www.radionz.co.nz/news/national/274616/relationships-aotearoa-says-likely-to-close

Now....which organisation will take over the contract....who is primed and ready, waiting in the wings???

Hilary Stace

Tue, 26 May 2015 12:13:38 +1200

Now the Minister says the RA must hand over the names, files and confidential information of clients by the time they close at the end of the week. Huge ethical issues there. What about each person's consent? The Minister just has no idea about such professional relationships.

Joe Wylie

Tue, 26 May 2015 11:58:05 +1200

So why is the government destroying this organisation and leaving vulnerable people stranded?
Prioritising resources?

Hilary Stace

Tue, 26 May 2015 11:42:25 +1200

Feeling pretty sad about the forced closure of Relationships Aotearoa. Few people go to a counsellor just for fun They go because they need help from a trained professional. That trained professional needs a good healthy organisation to support them and their professional development and supervision. Counselling is a profession…

Hilary Stace

Thu, 21 May 2015 09:45:00 +1200

At times. This is more about her own experiences.

Sacha

Thu, 21 May 2015 08:56:54 +1200

She doesn’t presume to know what her children want

I meant does she ask them and include that.

Hilary Stace

Thu, 21 May 2015 07:58:48 +1200

She has written a series of posts over the last several years. They started with her finding out about autism as her first child was diagnosed (and much later the second), then her struggles finding suitable schools and trying both special and mainstream, and navigating the minefield of disability policy…

Sacha

Wed, 20 May 2015 23:49:11 +1200

I've read a handful of posts. Does she talk about what her children experience or want?

Hilary Stace

Wed, 20 May 2015 22:30:05 +1200

An insightful new post from the autismandoughtisms blog

Rob Stowell

Sat, 09 May 2015 17:46:27 +1200

Hi Ali – good to see you here :) (I'm the other Oscar's dad, assuming you are the right Ali!)

Marc C

Sat, 09 May 2015 15:47:32 +1200

Thanks Ali, that is new to me, but if it is so, then this may be a welcome signal for some “innovation” to be included in Labour’s future policies.

I would not read too much into it as yet, as Professor Guy Standing from London was here not long ago,…

Ali Scott

Fri, 08 May 2015 14:10:51 +1200

I have heard Andrew Little talking about UBI and seriously considering it.

Rosemary McDonald

Tue, 05 May 2015 14:56:03 +1200

This...http://www.radionz.co.nz/national/programmes/morningreport/audio/201753038/guidelines-to-be-introduced-for-teachers-restraining-children

was on Natrad this morning.

This is a huge issue that needs much discussion....are the parents of these children involved in this process?

Hebe

Tue, 05 May 2015 00:34:52 +1200

Thank you. I'm unable to say anything but that.

Joe Wylie

Mon, 04 May 2015 10:19:51 +1200

And now yours might be staying put at school, often without any qualifications and despite everyone’s best efforts nowhere near the aspirational NCEA Level 2 that is now the essential ticket to successful adulthood.
Thanks for keeping this one alive. It’s now over twenty years since the door was closed…

Rosemary McDonald

Mon, 04 May 2015 09:43:18 +1200

Taking the risk to show a bit of vulnerability has not resulted in the scorn I sort of expected.

As if, Hilary!

So often we feel we are the only one with such thoughts. We're not, and the really important thing is that we talk about these feelings, thoughts, issues.…

Hilary Stace

Mon, 04 May 2015 09:11:53 +1200

Thank you Lesley. I am gratified by the responses to this post and how the concept of Chronic Sorrow resonates with many peopole. Taking the risk to show a bit of vulnerability has not resulted in the scorn I sort of expected.

lesley maclean

Sun, 03 May 2015 14:45:07 +1200

Thank you for your wonderful post, Hilary. It feels very sane and healing to recognise my own sorrow. I’ve been stuck for too long thinking it is up to me to ensure that my son reaches his potential, despite a lack of external supports and the difficulty he has in…

Hilary Stace

Fri, 01 May 2015 17:52:24 +1200

Thank you Erin and Martin for your perspectives.

Martin

Fri, 01 May 2015 15:53:48 +1200

First , thanks to Hilary for the post in the first place; you have written eloquently about a very difficult topic which we in the disability world generally steer away from for fear of been seen as weak, poor-meish and so on. So thanks to you Erin for broaching the…

Erin

Fri, 01 May 2015 12:49:21 +1200

This is a very well-written collection of thoughts!

I am a disabled person, not a parent of a disabled child, but I sometimes feel similar in regards to the "grieving the what could have been" thing. I think of myself as a confident person and am proud of who I…

Hilary Stace

Fri, 01 May 2015 07:54:01 +1200

Good to have that reminder, Sacha.

There has been some useful and informative material from a variety of authors posted on Access over the last year, and great discussion. Thanks to Russell for setting it all up and to everyone for contributing. Must be about time for a first birthday…

Sacha

Fri, 01 May 2015 07:34:32 +1200

being the paid advocates of the disabled.

No. They simply are not. They are advocates of service providers. It does us no favours to be unclear about roles. That's why one of my first posts here was about the topic.

Sacha

Fri, 01 May 2015 07:29:11 +1200

it's as if they think Asperger's is a brand of beer.

focused flavours, crisp finish

Sacha

Fri, 01 May 2015 07:23:09 +1200

constant oversight and investment in the providers

I'd go with that in the recipients and strengthened advocates instead. Might actually cost less than the army of provider contract monitors currently employed.

Kumara Republic

Fri, 01 May 2015 01:59:08 +1200

I've been having a bit of discussion about 'inspiration porn'. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can 'overcome', and not about the viewer having to challenge their own practices or attitudes.

Which brings me to the 'motivational psycho-babble' I…

Joe Wylie

Thu, 30 Apr 2015 21:30:31 +1200

I’ve been having a bit of discussion about ‘inspiration porn’. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can ‘overcome’, and not about the viewer having to challenge their own practices or attitudes.

Stella Young expressed it best in this TEDx…

Hilary Stace

Thu, 30 Apr 2015 20:46:26 +1200

Stella Young expressed it best in this TEDx…

Hilary Stace

Thu, 30 Apr 2015 18:53:41 +1200

Thank you Bart. Perhaps it could be 'lucky enough to not have to deal with it ... at the moment'.

Bart Janssen

Thu, 30 Apr 2015 17:01:53 +1200

And thank you Hilary.

As always your experiences are valuable for those of us on the outside.

I wanted to use the phrase "lucky enough to not have to deal with it" but I don't think that fits, since you've so ably demonstrated that you ARE lucky. I don't think…

Bart Janssen

Thu, 30 Apr 2015 16:57:13 +1200

Neolib crackpottery, yes. I’d never want us to try vouchers for education, etc, but the disability support system is so misaligned I can’t dismiss the potential value.

But this isn't about trying to do it better for those in need.

It's about doing it cheaper so the Nats can get…

Rosemary McDonald

Thu, 30 Apr 2015 15:33:32 +1200

That conflation of roles is a problem. Neither of those people are "being paid to represent the interests of the disabled community".

NZDSN...I suggest you have a gander at their "Vision " page on their website, http://www.nzdsn.org.nz/nzdsn/about/
"Vision
An inclusive New Zealand where all disabled people are included and valued,…

Sacha

Thu, 30 Apr 2015 14:25:27 +1200

if Local Area Coordinators are going to do the Service Coordination part of the Needs Assessment and Service Coordination providers

Then I hope they do not just keep the same people and swap the job titles. A different focus/skillset needed.

Sacha

Thu, 30 Apr 2015 14:19:25 +1200

Na!

Salts of the earth.

Sacha

Thu, 30 Apr 2015 14:18:17 +1200

That conflation of roles is a problem. Neither of those people are "being paid to represent the interests of the disabled community".

NZDSN represents the interests of disability support service providers, full stop. Barry runs a service provider. However he also has a very long history of advocacy for disabled…

Hilary Stace

Thu, 30 Apr 2015 13:00:29 +1200

But you know what it is like to be on the wrong side of the front line

Rosemary McDonald

Thu, 30 Apr 2015 12:17:48 +1200

An innovative disability support system would have her at the top level of expert advisors (along with Rosemary McDonald of course).

That's intended as a joke...right?

We all know that the only true 'experts' are those who are in paid employment, of some sort.

They have a title, a job…

Angela Hart

Thu, 30 Apr 2015 09:55:36 +1200

disability support system is so misaligned I can't dismiss the potential value.

Absolutely. And the EGL model certainly has the potential to improve things. The trouble is this government has an established pattern of twisting what it does to fit goals of cost reduction and reduced government involvement rather than…

Rosemary McDonald

Thu, 30 Apr 2015 09:03:54 +1200

So, if Local Area Coordinators are going to do the Service Coordination part of the Needs Assessment and Service Coordination providers, then they will surely drop the the Service Coordination part of their title....and become...

NA!

Or yet another layer of bureaucracy taking precious funding away from the actual disabled…

Hilary Stace

Thu, 30 Apr 2015 08:51:01 +1200

I have a friend whose high needs autistic daughter is soon to leave school. There are no providers locally for her for any suitable day programmes and no providers keen to provide suitable accommodation, considering she would need 24/7 care (literarily 24 hours as sleep is minimal and night time…

Rosemary McDonald

Thu, 30 Apr 2015 08:12:41 +1200

Hey. EGL sounds great!!!!

http://www.odi.govt.nz/what-we-do/improving-disability-supports/enabling-good-lives/key-messages.html

All those positive happy clappy words, strung together by a team of joygerms on P.

"Service Providers will....

•work to ensure community (generic) options are exhausted before specialist services are considered "

Sacha

Thu, 30 Apr 2015 08:05:59 +1200

Neolib crackpottery, yes. I'd never want us to try vouchers for education, etc, but the disability support system is so misaligned I can't dismiss the potential value.

Joe Wylie

Thu, 30 Apr 2015 07:57:57 +1200

However the current service system is so broken that vouchers may actually be a disruptive improvement – but only if they’re implemented alongside investment in market information and advocacy mechanisms. And whoever sets the value of the vouchers will still have too much control of the results.

Hasn't Roger Douglas…

Sacha

Thu, 30 Apr 2015 07:52:55 +1200

Oh, and thank you for the post, Hilary. There's a parallel process for disabled people of reconciling our lives against the stereotyped ones we all swim in. As I've said to some policy wonks, it's not like everyone grows up to be an astronaut or pop star, yet we don't…

Sacha

Thu, 30 Apr 2015 07:50:19 +1200

Something along the lines of the British social development bonds perhaps or the voucher type system the Productivity Commission has just proposed

They seem to be in the correct phase of the NZ bonds pilot, but I reckon vouchers are more likely. Bonds involve someone who matters taking responsibility. They'd…

Sacha

Thu, 30 Apr 2015 07:34:47 +1200

Mostly, however, there are bits and pieces of services of variable quality

And no genuine mechanisms to inform purchasers about that. It's a pseudo-market like so many others.

Rob Stowell

Wed, 29 Apr 2015 23:13:09 +1200

Thanks Hilary. Really hit the spot.

Kumara Republic

Wed, 29 Apr 2015 23:11:18 +1200

Thank you Marc. I am dreading what the Budget will bring after that hint from Bill English. I fear it will be something that privatises social support and absolves the government of responsibility. Something along the lines of the British social development bonds perhaps or the voucher type system the…

Kumara Republic

Wed, 29 Apr 2015 23:01:57 +1200

what the hell needs to happen to shake people up, to see that this cannot continue.

I've said it before, but it's probably going to take some kind of bubble burst – housing in this case – to jolt certain people back to reality. The most obvious fatal weakness of…

Rosemary McDonald

Wed, 29 Apr 2015 22:48:04 +1200

Trouble is the people devising these amazing new systems have no understanding of what it is like on the front line, to be in constant stress, have no status and little money.

Absolutely no idea at all....that is why they hire them.

Seriously, a mate with considerable hands on experience…

Hilary Stace

Wed, 29 Apr 2015 22:22:43 +1200

Marc C

Wed, 29 Apr 2015 17:19:59 +1200

It hurts me to read this post. It does though seem to prove my position, that we need a totally different society. We need for a start a universal basic income, fore EVERYONE, no matter whether disabled, fully healthy and equipped to work, or not so, for various reasons.

We…

Joe Wylie

Wed, 29 Apr 2015 17:12:29 +1200

While it's years since I first saw Ira Wohl's remarkable Best Boy the moment when his elderly Aunt Pearl talks about how one can't help but have moments of feeling singled out for a kind of divine special punishment has stayed with me. Vulnerable, dignified and utterly humane.

Hilary Stace

Wed, 29 Apr 2015 15:06:46 +1200

Thank you Adrian and look forward to hearing more about this project. There are many good people in the public service and good that you have found support.

Adrian Coysh

Wed, 29 Apr 2015 15:01:22 +1200

Hi Hilary,
As a father of three children with Retinitis Pigmentosa, which often leads to total blindness, I hear what you are saying. I have been working for 4 years to build a platform to help businesses connect with job seekers from a Diverse background (although my personal passion is…

Lilith __

Wed, 29 Apr 2015 15:01:05 +1200

Arohanui to you Hilary, and many thanks for sharing this.

Hilary Stace

Wed, 29 Apr 2015 14:45:44 +1200

Oops, one shouldn't type without one's glasses on!

Thank you everyone for your supportive comments. I thought this post might have sounded a bit like the moaning of the privileged. In NZ we have it so good etc. There is always someone less well off.

I know we are lucky.…

Kumara Republic

Wed, 29 Apr 2015 14:44:08 +1200

Another crisis could be just around the corner. A recent bout of Chronic Sorrow was triggered after an understanding talk with my son’s employer. After 10 years as a loyal employee the job was not working for him or them. And yes I could see that. But what chance another…

Hilary Stace

Wed, 29 Apr 2015 14:04:52 +1200

Thanks Joe. That means a lot as we have had some 'robus't online conversations at times.

Angela Dell

Wed, 29 Apr 2015 13:53:51 +1200

Thanks for sharing Hilary-you are telling all our stories too.

Rosemary McDonald

Wed, 29 Apr 2015 13:48:41 +1200

Must be the season for it Hilary.

Every word right on the mark.

I wish I could pick out the lines that best represent my feelings this morning as Peter's e-motion wheels packed a sad and he's now stuck with me pushing him around until I can fix them.

"Arrangements…

WaterDragon

Wed, 29 Apr 2015 11:35:52 +1200

Lovely piece that shines Hilary.For some time now I've said that parents of disabled sons and daughters also have a "place in the sun" and valid concerns- not one and the same as the place to stand of disabled people, but one that is valid too. Your words illuminate that…

Wendy Duff

Wed, 29 Apr 2015 10:31:47 +1200

Thank you Hilary for posting what a lot of us think and also go through, Sorry you are having to go through this.
Those out there touting – put the person with the disability out in the Community – is all well and good if they can cope and the…

BenWilson

Wed, 29 Apr 2015 10:25:20 +1200

Arohanui, Hilary. I've felt every bit of this. Several times. It's not exactly nice to hear from such an old hand as yourself that I could be feeling it again and again throughout my life. But it is better to be prepared. Thank you for your insights.

But why should…

Joe Wylie

Wed, 29 Apr 2015 10:05:25 +1200

It was hard to write and hard to admit to such feelings.

One of the finest pieces that's been published here.

Hilary Stace

Wed, 29 Apr 2015 09:48:48 +1200

Thank you all. It was hard to write and hard to admit to such feelings. But today the sun is shining and we are feeling resilient.

Justine Fletcher

Wed, 29 Apr 2015 09:36:40 +1200

With much love and solidarity, Hilary. And I continue to rack my brain to find ways forward for our kids – it's such a long road.

Johnny Canuck

Wed, 29 Apr 2015 08:48:30 +1200

Thanks from me too: a difficult subject but one that needs to be written about and acknowledged.

The rights-based approach you outline has much potential, but seems so far away as to be almost "unimaginable".

Russell Brown

Wed, 29 Apr 2015 08:24:08 +1200

Thank you for writing this, Hilary. It's good to acknowledge the sorrow. Kia kaha.

Public Address

Wed, 29 Apr 2015 08:24:07 +1200

Discussion from blog post.