Thanks IHC


People with intellectual disabilities and their parents owe gratitude to IHC which has just turned  70:

On 25 October 1949, 22 parents met in Wellington. A notice had been placed in the Evening Post the previous day calling for ‘parents and guardians of backward children in the Wellington district… to attend a meeting … to consider the formation of a parents’ association’. 

The meeting elected Hal Anyon as interim president and his wife Margaret Anyon as secretary/treasurer, plus two committee members. At the following meeting, on 23 November, 50 people formed the Intellectually Handicapped Children’s Parents’ Association. Within three years there were a thousand members in several branches around New Zealand. In 1994, following several name changes, the large nationwide organisation became the IHC.

Those founding parents were brave and stroppy. They had to be. In 1949 there was widespread discrimination against people with what was then called intellectual or mental handicap. This situation was a legacy of decades of eugenic assumptions in which disabled people, particularly those with intellectual or learning disability, were considered defective and likely also deviant. Widespread assumptions of ‘tainted heredity’ and shame meant parents were strongly advised to hide their disabled children away from families and communities in institutions and forget about them. Many mothers were powerless to fight the removal of their child in the face of state authorities. . .

Both our sons had brain disorders which left them with multiple disabilities.

Tom was only 20 weeks when he died. Dan survived five years without passing any developmental milestones.

Looking after him got harder as he grew physically without developing intellectually and IHC’s support was invaluable.

Just how good the organisation was, was summed up by the manager of the local branch when we were trying to work out what was best for Dan.

He said, “Let us know what you need and we’ll work out how to provide it.”

I served on the branch IHC committee for several years which increased my admiration for the work the organisation does in supporting and advocating for the intellectually disabled and its members.

They continue to face challenges, one of which has resulted in a mother taking the government to court to prove her disabled son isn’t her employer:

An independent disability advocate has filed papers asking the Employment Court to decide if people with intellectual disabilities have the mental capacity to be employers.

The government is promising to change this, but advocate Jane Carrigan doesn’t want to wait and is going to court. . .

In order to get funding, Ms Fleming has to be an employee of her disabled son, a relationship the Ministry of Health has already admitted is a mere fiction.

Independent disability advocate Jane Carrigan said for too long the ministers and their ministries have indulged in what she calls tricky and technical conduct, by creating sham employment relationships.

And in doing so, the ministers had removed themselves from their responsibilities under the New Zealand Public Health and Disability Act, she said.

“This allows the ministry to step back in the very cynical name of choice and control and say to people with disabilities – the majority of whom I might add have an intellectual disability – ‘well there you go, you’re the employer, you have the choice to employ who you want, the control to manage how your employment relationship works’.”

Ms Carrigan said that was ludicrous.

“The so-called employer is usually lying in bed with nappies on and has no capacity to manage the employment relationship intellectually. And even those people who are only physically disabled, many of them, because they are high/very high needs, will rely on a family member to do all the employment relationship stuff,” Ms Carrigan said.

Ms Carrigan said if there was an employment relationship it was between the carer and the Ministry of Health and she wanted the court to say so. . .

Thanks to those brave and stroppy parents who formed it, IHC’s advocacy has resulted in a lot of improvements to care and support for intellectually disabled people and their families in the last 70 years.

I am very grateful for the help it gave us and also aware of the help others still need and the battles still to fight.

IHC cans calf scheme


Mycoplasma bovis has claimed another victim – the IHC Calf Scheme:

Due to the very real risk of spreading the Mycoplasma bovis disease, IHC has decided for the first time in 33 years to suspend crucial aspects of its Calf and Rural Scheme.

This includes picking up calves and organising IHC sales, simply because we cannot be part of something that puts farmers’ livelihoods at risk.

IHC has had a long and important partnership with farmers, which means together we have been able to make a real difference to the lives of people with intellectual disabilities – particularly those people living in rural communities.

We’ve spoken to many farmers, including at this year’s Fieldays, many of whom were concerned about the spread of Mycoplasma bovis.

Since the eradication programme was announced by Government, IHC has been in ongoing talks with the Ministry for Primary Industries – and based on information provided to us we have had to make some very tough decisions.

Over many years, IHC has tightened its practices – only picking up animals with National Animal Identification and Tracing (NAIT) ear tags and Animal Status Declaration (ASD) forms.

IHC National Manager Fundraising Greg Millar says despite significant improvements in these systems, the risk remains too high.

“We have determined there should neither be IHC-organised transportation of weaned calves to sales, nor IHC calf sale days,” says Greg.

“IHC looked at every possible way to keep the scheme running as is, but after deliberating with MPI we determined it was too much of a risk.

“This is an important decision and one that we have not made lightly – the Calf and Rural Scheme is a long-standing fundraising programme that is now in its 33rd year, and generates more than $1 million annually for people with intellectual disabilities.

“We have a real obligation to do what is right for New Zealand farmers, their livelihoods and long-term sustainability.

“We are keeping up to date with the latest findings, and are working to gather the best data possible, to determine how the scheme will operate in the future.”

IHC would like to encourage people who want to continue to support people with intellectual disabilities to donate and take part in our virtual calf scheme, donating $300 in lieu of a calf, by visiting

“We would also like to acknowledge what a tough time this has been for farmers, and we’re making a commitment to those in rural communities around New Zealand who have supported those with intellectual disabilities over the past 33 years.

“IHC is very grateful for the ongoing support in this difficult year of the key sponsors, in particular PGG Wrightson, who has supported us from the beginning of the calf scheme.” 

On The Country today, Jamie Mackay was encouraging everyone to donate money in lieu of stock.

We will be.

IHC was wonderfully supportive of our son who was profoundly disabled, and us.

Their attitude was summed up by the response to a query about what help was available.

The local IHC manager said, “You tell us what you need and we’ll make our system work for you.”

It’s more than 20 years since we needed that help but there are lots of other disabled people and their families who still need IHC’s assistance.

Are you working while you sleep?


A court case last year ruled that IHC had to pay staff when they were on night shift.

That faced the charity with a $176m liability for wages as a result of which two of its subsidiaries –  Idea Services and Timata Hou – have been put into statutory management pending an appeal.

If the staff were on awake and on active duty, of course they should be paid. If they are woken and have to help any of the residents they are paid for a minimum of two hours.

But if the residents require no assistance and the staff sleep all night, are they really earning normal hourly rates of pay?

I don’t think so. In most of the houses they are there in case of accident, illness,other emergency or to assist residents when required and most aren’t required to do anything most nights.

It’s fair that they are paid to be there but not the same amount they’d earn if they were working all night unless they are not just on call but on duty..

This case has implications beyond IHC and other providers of residential care for intellectually disabled people. Rest homes, boarding schools, hospitals and any other workplaces where people are on call but not actually working could find they too are liable to pay night staff when they’re asleep.

October 25 in history


On October 25:

1828 The St Katharine Docks opened in London.

1825 The Waltz King, Austrian composer Johann Strauss II, was born.

1838 Georges Bizet, French composer, was born.

1854 The Battle of Balaklava took place during the Crimean War (iCharge of the Light Brigade).

Charge of the Light Brigade.jpg
Charge of the Light Brigade by Richard Caton Woodville.

1864 John Francis Dodge, US automobile pioneer, was born.

1881 Spanish artist Pablo Picasso, was born.

1888 US polar explore, Richard E. Byrd, was born.

Lt com r e byrd.jpg

1917 The start of the  October Revolution, involving the capture of the Winter Palace, Petrograd, Russia.

 1938 The Archbishop of Dubuque, Francis J. L. Beckman, denounces Swing music as “a degenerated musical system… turned loose to gnaw away at the moral fiber of young people”, warning that it leads down a “primrose path to hell”.

1941 Australian singer Helen Reddy was born.

1941 US writer Anne Tyler was born.

1949 IHC was founded.

1971: The Christchurch-Dunedin overnight express, headed by a JA-class locomotive, ran the last scheduled steam-hauled service on New Zealand Railways (NZR), bringing to an end 108 years of regular steam rail operations in New Zealand.

 Sourced from NZ History Online & Wikipedia.

Losing fear and ignorance of disability


Dan had a degenerative brain disorder which left him with multiple disabilities. He passed none of the developmental milestones so could do no more when he died, 10 days after his fifth birthday,  than he could the day he was born.

He didn’t appear to see or hear, he couldn’t support his head or move himself. He couldn’t even smile.

We used to say he couldn’t do anything but in spite of that he taught us a lot.

Because of Dan we lost the fear and ignorance we might have had about disability and through him we learned to accept people as people regardless of what they can or can’t do.

Had he been born a generation earlier, Dan would almost certainly have been put into an institution rather than living at home as he did. That wasn’t always easy for us because he required 24-hour care and while the policy had changed, the system wasn’t up to speed with the support needed to meet the challenges of life in the community for people with multiple handicaps and their carers.

But we had wonderful support from family and friends, his doctors and organisations like Plunket and IHC and we weren’t aware of any discrimination against Dan, or us when we were with him.

Not everyone’s experience is so positive. That is almost always because of ignorance and we have Dan to thank because we’re not guilty of that.

This is posted as my contribution to Blogging Against Disabilism Day – and I tip my hat to In A Strange Land for directing me to it.

Private grief in public life


No one goes through life untouched by sadness but most of us are able to grieve in private.

It must be so much harder for people in the public eye like David Cameron whose son has died.

Ivan was six and from media reports it sounds as if he had a similar condition to our sons who had mulitple disabilities and recurring seizures.

Tom was only 20 weeks when he died. Dan was five years, however, he had passed none of the developmental milestones so could do no more than a newborn.

We had wonderful support from family, friends, agencies like Plunket and IHC, the family GP and Dan’s paediatrician but even so looking after Dan was difficult and we knew it would become more so as he grew physically without developing intellectually.

Because of that one of the emotions I felt when he died was relief. Dan’s death freed us to do things it had been difficult, or sometimes impossible, to do with him and relieved us from the strain of knowing every plan we made came with a proviso that Dan’s health would allow us to do it.

That doesn’t mean I didn’t feel anger, sadness and all the pain that comes with losing a child too. Not just for Dan but over the hopes and dreams I hadn’t even been aware of having for his future, because when you lose a child you also lose the teenager and adult he would have become.

But at least I was able to go through all that in private.

How much more difficult it will be for the Cameron family when David has a public role which is so demanding and his duties as Conservative leader will sometimes, perhaps often, conflict with his own need to grieve and be with, cherish and be cherished by, his family.

I hope they are surrounded and supported by the love and kindness that helped us and that they too find that grief passes, happiness returns and that life can be good again.

What’s a fair day’s wage for less than fair day’s work?


A business used to employ people from Idea Services (formerly IHC) to put labels on their product.

It wasn’t a particularly difficult job and the people enjoyed doing it. They also enjoyed earning the wages which were negotiated by Idea Services and regarded as fair by them, the workers and the business for which the work was done.

The business went back to Idea Services recently because they had more work but were told a change in the law meant the people now had to be paid the minimum wage.

The problem is that the people aren’t able to do the minimum amount of work required to justify that wage.

The business wasn’t exploiting vlunerable workers, it was giving them work they were capable of doing and found satisfying and it didn’t matter that they did it slowly.

The business will find other workers to do the job quickly enough to earn at least the minimum wage. But that won’t help the people with the intellectual disabilities who’ve lost their jobs.

%d bloggers like this: