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Chronicling Life On the Disabled Margins

One of the country’s popular online hangouts has turned over part of its work to documenting life on the disabled margins.

Although the Public Address site is best known for the prolific musings of founder Russell Brown, it has always been the work of several contributors writing on a variety of broad themes—life in the south, bisexuality in the city, political humour, and so forth.  

Ambulance Services A National Treasure

By Laurie Hilsgen

When the unexpected happens you realise how important it is to have the flashing lights appear quickly in your driveway (or at the scene of the accident, or beach emergency, or whatever). 

If you or someone in your family is frail, elderly, or has a chronic condition, the flashing lights come often. 

The point is, they always come. 

Money and Gifts Muddy Caring Waters

By Laurie Hilsgen

When is a nurse who is providing nurse-type services privately for elderly clients who are also friends not operating in a professional capacity and thus able to accept a bequest of $315,000? 

Golden Years (For Some)

Retirement is never very far from the news pages — for the very good reason that it’s never far from the minds of those in their middle years. 

Here, for instance, is a recent piece on the Commissioner for Financial Literacy's 2013 review of retirement income policies. The survey found there is an “increasing gap” between the standard of living that we aspire to when we retire and the standard of living we can afford on New Zealand Superannuation. 

Bev Grammer: Loss Of A Disability Leader

Carers NZ was saddened by the recent death of disability sector leader Beverley Grammer. 

We have worked with Bev for many years and were shocked to hear of her death following a short illness. 

NZ Tops World In Social Progress?

By John Forman

New Zealand's social progress for carers doesn't quite live up to its top ranking in the Social Progress Imperative's national wellbeing assessment of 130 countries. 

The body's advisory board is led by Dr Michael Porter, known here for his work on international competitiveness in the 1990s. 

Not Everyone Can Be A Carer

By Laurie Hilsgen

The case of the Hawkes Bay woman found guilty today of failing to provide the necessaries of life for her 82 year old Mum raises lots of issues for families, health professionals, and society. 

Jo-Ann Quinn (51) was her Mum Maureen's sole caregiver, an arrangement made with her seven siblings and which appeared to work well for a time. 

The (Sorry) Case Of Pupil A

This week marks World Autism Day—and just in case you miss it, there’s a dedicated Autism Month to follow—in which people affected by the still-baffling condition and try to shine a light and promote greater acceptance for all affected by it. 

Hopefully, it will be a month in which a relevant saga close to home might be settled without the prolonged stress that has characterised it to date. 

The Men of Atalissa

For decades, a group of men with intellectual disabilities seemed happy living and being cared for in a small Iowa town. 

Set aside 40 minutes, if you have them, for the story of what happened when their neighbours found out the truth. And a hanky. (And an extra minute to applaud the reporters from the New York Times who compiled this brilliant video report.)

Half A Night At The Movies

And so to the family lounge, where my wife and I spent part of last night taking a break from wine and conversation and in the company of the DVD player and a rented copy of A Separation, the much-lauded Iranian film of 2012 that for various reasons we never got around to seeing at the time of its release.

And Then There Are None

By Laurie Hilsgen

So this is how it feels. Mum warned me it would happen.

Despite the much touted ageing population, one by one my upper layer of family is disappearing. 

Of 18 including my father, only two remain. 

Of my mother's family of 10, none survives, all dying considerably younger than their parents (Granddad made it to his 90s, Grandma to 101).

Burmese Daze

Carers come in all shapes, sizes and circumstances — and apparently ages.

Faifax Media reported today on the, shall we say, regrettable story of a Burmese refugee who fled his war-torn country only to be struck down by a medical oversight in New Zealand. 

Khua Kam Thang Nawl has lung cancer, but for months was prescribed paracetamol rather than cancer treatment.

Caring For The Skateboarders

Talk about a picture being worth a thousand tears. 

English carer Clare Lally thought one of her worries had been addressed: the local council had provided a house for her and her wheelchair-bound daughter. 

But there was a problem, three flights of them out front, to be exact, which made it very difficult for the family to access their home. 

So the 33 year old mother complained, and complained, and finally the council came to the party.

Sort of.

The finished product cost $80,000.

The finished product came complete with 10 ramps.

Older Men Are More Likely To Be Carers

Without wishing to get into the familiar media trap of freighting British statistics directly into the New Zealand situation, some data published today in the Guardian offers interesting, and slightly disturbing, antipodean food for thought. 

According to Christine Milligan, the director of the Centre for Ageing Research at Lancaster University, older men are more likely to be carers than women.

One For The Carer's Cookbook

My next column for the magazine is all about meals, specifically some of the food issues one faces when caring for an autistic kid.

One of the things the column doesn’t get around to mentioning is the upside of being somewhat housebound because of caring—at least for me—which has been the (re) discovery of cooking, and finding cost-effective recipes that are a bit interesting and different as well.

Perchance To Dream

An ideal sleep environment (the right temperature, low wattage bulbs, clean room, no noise machines, and, especially no cellphones) soothes any person’s senses. 

Without it, say psychologists, we’re booked for ongoing problems such as daytime sleepiness, poor decision-making, interference with learning, and accidents. 

To Be Taken With A Pinch Of Salted Viagra

So what’s going inside assisted living facilities and nursing homes? Helpful hint: the supposedly correct answer doesn’t mention bingo evenings, discussions about indoor bowls, or the quality of residential care. 

The Carer And The Terrorist

Who, besides highly paid editorial writers, political leaders and popular movie producers, can give us an insight into the mind of a terrorist? A care worker can. 

The extraordinary correspondence between Rory Green and Khalid Sheikh Mohammed rates as one of my favourite news stories over the summer break. 

Sometimes Life Isn't Fair

Carers NZ sends condolences to the family of John Tangiia, who was killed in a cycling road accident while building his fitness over the holidays to better support his 11 year old disabled son. 

Like many family carers, John was no doubt conscious of the need to remain physically fit so he could provide safe, quality support for his son. 

On New Year Honours (And The Coolest Media Item From 2013)

Here is the full list of New Zealanders have been hailed for services to the community and their achievements in today’s New Year Honours. 

In addition to the usual quota of public servants, jurists and political figures, this year’s list salutes those who served in the causes of heavy haulage, squash, netball, horse racing and fashion (or won a Booker prize). 

On Susan Boyle, Asperger Syndrome And You-Know-Who

Interesting to see that Susan Boyle, the Scotswoman who rode to international fame on the back of her powerful performance of Les Misérables' "I Dreamed A Dream" on Britain's Got Talent has been diagnosed with Asperger syndrome. 

The 52-year old says she is happy to have the condition insofar as it gives her a proper label.

A Ray Of Light

Rest homes have been very much in the media spotlight these past few weeks, and much of the coverage has been gloomy at best.

The country’s major daily newspaper, for one, has gone very big on the subject—most recently with a five-part investigation into the state of the nation’s facilities for the aged—and it’s a fair bet that no reader went away from its findings feeling in any way upbeat.

Inside NZ Rest Homes

So the New Zealand Herald’s long-promised five-part investigation into rest homes has arrived—and the first installment at least reads just fine.

Not to say horrifically. Today’s spread includes accounts of bullying staff, patients left with undiagnosed scabies for months on end, residents zonked out on medication and one rest-home manager who "was heard bragging at a dinner party that she once used to milk cows and now she milks the Government.”

The Glory of Love

Here a six-month investigation into the state of residential care homes reveals dozens of cases of abuse, including repellant episodes involving an intellectually disabled teenager left for hours in a toilet by her tax-funded “carers".

Horror Stories, Please

The blogger Cameron Slater calls it an “exclusive”—that’s to say, a riveting development in current affairs—which is probably stretching things a bit. 

Still, the guy who helped break the story of Len Brown’s extramarital affair may be on to something in his catch about how a major newspaper (his words) does a hit job in a care-related area. Or maybe not. 

We Need To Talk About LCP

Taking a deep bow to all things British is a familiar cultural crouch here in the old Dominion.

Surprisingly, though, this doesn’t seem to be the case in a care-related area that Britain is moving away from at a rate of knots even while New Zealand hangs on for grim life—sorry, grim death.

Ageing, Caring, and Mr Makhlouf

It is hard to get a handle on New Zealand's direction (or indeed long-term vision) about the important topics of ageing, health, disability, and family caregiving. 

On one hand the Government and its agencies are terrifically busy massaging the muscles and organs of our social and health services. 

But there is a sense that the skeleton that underpins it all isn't feeling the love.

Taking Care of the News Media

I know it can be tedious when we media types write about our work and our industry as if we’re the centre of the universe, so I apologise in advance for that. 

Family carers: Nothing about us without us

By Laurie Hilsgen

Debate about the word 'carer' is nothing new, but the time has come to speak out in defence of family caregivers who, after all, are entitled to their own views about the language used to describe their role and responsibilities. 

I understand the perspective of some disability advocates and mental health consumers who dislike the word carer, finding it patronising and detracting somehow from the relationships that are at the heart of any caring scenario. 

Wakey Wakey! Time for action over sleepovers payment

The Government really ought to wake up.

More than a year after legislation was passed, carers are still being paid as little as $4 an hour for working overnight, Fairfax Media reports, adding (a touch superfluously) that the affected disability support workers are “at the end of their tether".

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