Ben Hills 

In the spring of 1989 the famous Outback painter Pro Hart walked into the desert near his studio in Broken Hill to pick a bunch of wildflowers to be placed on the grave of his grandson, Joseph Willoughby. The child had died in his cot a few days earlier, aged only seven months, a presumed victim of the mysterious Sudden Infant Death Syndrome (SIDS).

After the funeral, Pro Hart noticed that the baby’s mother, his daughter-in-law Julie Willoughby, was still clutching the posy. He took the wilting flowers into his studio, pretending he was going to put them in water, and instead began painting them.

The result was a Pro Hart master work, Joseph’s Painting, with the iridescent splashes of colour and bold, spontaneous brush and palette-knife strokes that have become his hallmark. As a tribute to the dead infant, and to raise money for research and counselling for SIDS, a foundation was established to sell prints of the painting.

Three years later, Pro Hart and his business manager, Margaret Hyde, have not seen any accounting of the money from the trustees of the foundation, the Queensland Sudden Infant Death Research Foundation (QSIDRF). “I just don’t know what happened to it,” confessed Pro Hart this week.

Also mystified is his friend, the artist Tony Purves, who was the “art director” of the appeal and spent several months travelling Australia and New Zealand promoting the prints – with the help of local SIDS organisations. The 2,500 prints sold for $25 and $250 (for the signed version) and Tony Purves believes that more than $100,000 was raised from this, and a subsequent campaign selling prints of a painting by the New Zealand artist Jane Evans.

The QSIDRF president, Michelle Fremantle, a trustee of the foundation, said she could not comment and did not know how much money had been raised or spent. She referred the Herald to the organisation’s accountants, KPMG Peat Marwick, who also could provide no enlightenment beyond confirming that no audited accounts of the Joseph Willoughby Foundation had been prepared.

However, a review of the foundation’s books by KPMG, which has been obtained by the Herald, discloses a litany of bad accounting – the register of prints and the cash-book were not properly kept, receipts had not been issued(in fact, the foundation did not even have a receipt book or a rubber stamp)and no application had been made for tax exemption.

Says Purves: “I think it’s absolutely preposterous and scandalous that all this money should be donated with no proper accounting, and I have the impression that this is only the tip of the iceberg as far as the other SIDS organisations are concerned.”

And the accounts of the various State and Federal SIDS organisations around Australia – all of them autonomous, some not audited and with no publicly-available consolidated accounts – bear this out.

They show (see graphic) that up to 50 cents in every dollar raised for SIDS causes is actually spent on fundraising and administration, more than double the average of other Australian charities. Hundreds of thousands of dollars are spent on staff salaries, travel and conferences – particularly in Melbourne, where the committee employs no fewer than 10 full-time and a number of part-time workers for undisclosed salaries.

The various SIDS committees have spent relatively little on research, instead amassing an extraordinary $8 million cash in the bank, and another $3 million in houses, cars, furniture, equipment and other assets. One property, a historic $305,000 house in Parramatta, has sat empty since the NSW SIDS committee bought it in January.

In Queensland, the former State secretary, Kevin Larkins, is campaigning for a public inquiry into the SIDS organisation, claiming jobs for the boys and money unaccounted for.

In the past four years, the public and governments have donated something like $27 million for work on the syndrome that killed baby Willoughby. So how did a worthy cause like this get into so much trouble?

It is, without doubt, the hottest fundraising gimmick launched in Australia for years. With more than 28,000 registered charities jostling for attention in NSW alone, the red plastic clown noses of the SIDS Council of Australia were an instant attention-grabber… and mega money-spinner. The cause itself had instant appeal – counselling for the 300 families which lose a baby to SIDS every year, education and scientific research into its cause.

For the past three weeks, building up to official Red Nose Day yesterday, politicians, businessmen and the Prime Minister’s wife, Annita Keating, have donned red noses for the TV cameras. Giant noses adorned the Boulevard Hotel and a dozen other Sydney city buildings. They sprouted from the radiators of thousands of trucks and cars, and last week at Darling Harbour the State Transport Minister, Bruce Baird, presided over the “nosing of the fleet” in which noses were strapped onto a bus and a ferry as the SIDS anthem “Being a Little Silly Can Be a Big Help” blared in the background.

In the four years since the annual campaign was launched in Australia in 1988 (the idea was pinched from an English promotion by a company called Comic Relief to raise money for starving children in Africa), the SIDS organisation has suddenly sprung from amateur committees raising pennies with cake stalls to a multi-million-dollar industry. Red Nose Day is run by professional consultants and costs more than $1 million a year to run.

It’s been so astonishingly successful that Australia is trying to export it to America – the local organisation hopes to sell $200,000-worth of red noses, literature and other SIDS material this year.

Last year (in spite of keen competition from other plastic gizmos such as Green Smile, an Environment Day promotion, or the National Heart Foundation’s Heart Throb badges) the national appeal grossed $4.5 million, and other fundraising and investment income took the total raised to about $10 million. This makes SIDS Australia’s sixth largest charity.

But it is not so much the size of the appeal as its effectiveness in delivering the dollars to the cause that concerns the critics of the SIDS organisations. Prominent among these is Kevin Larkins, a 48-year-old public servant now living in Brisbane, who was one of the founders of the first SIDS group in Melbourne after he lost a baby in 1975. He, and his wife, Dianne, who is a trained welfare officer working with SIDS families, have been supporters of the organisation for 17 years, until last month when Larkins was defeated as secretary of the Queensland branch.

He says that this followed his criticism of the management of the organisation, including its failure to account for money donated to the Joseph Willoughby appeal. He felt so strongly that he wrote to the Queensland Premier, Wayne Goss, urging him not to launch the Red Nose appeal this year because of “serious concerns (over) financial mismanagement …” Goss ignored him.

Larkins claims – and the accounts of QSIDRF bear him out – that the organisation is “unbelievably inefficient” in its use of funds. The unaudited accounts show that (including its income from Red Nose Day) the Queensland organisation raised nearly $500,000 last year. But only $100,000 of this, 20 cents in the dollar, was spent on medical research.

The Queensland committee spent more than $200,000 on fund-raising, and on administration, where, Larkins says, employees include the mother of one committee member who is paid to do the cleaning, and the sister-in-law of another, who does the books. “We used to get a lot of volunteers, but now everyone wants to be paid,” says Larkins.

The rest of the money finishes up in the fat assets book of the Queensland branch. It had, at balance date, nearly $500,000 cash sitting in the bank and recently bought a former church in the suburb of Mt Gravatt for its headquarters and spent more than $100,000 doing it up and fitting it out with furniture and equipment.

Says Larkins: “It is an almighty mess … (SIDS) was a small organisation which was run by volunteers on a shoestring. Then suddenly they got all this money pouring in. They were just amateurs and they didn’t know how to handle it. They started living in a grandiose style far beyond their means and salting the money away to perpetuate themselves.”

Not only that, but in Larkins’s view the small amount of money that is allocated is not spent where it could be most effective, with grassroots organisations like the SIDS Parents Network.

“They are the ones who do the good basic work like counselling people at two in the morning when their baby dies,” he said. “They asked and asked for funds, but got nothing. The people who do the real work are not getting a cracker out of Red Nose Day.”

And Queensland is not the only SIDS organisation to attract criticism.

In leafy Harold Street, North Parramatta, a century-old freestone house has been standing empty since January. Local residents, concerned about overhanging trees from the property, began investigating its ownership and discovered that this valuable, empty house had been bought (at auction, for$305,000) by the NSW SIDS association.

Elizabeth Bishop, the State executive director and national secretary of SIDS, said the building would become the new headquarters of the SIDS committee – it currently rents space at Baulkham Hills for $10,000 a year -and she was hoping it could be occupied within a few months. The seven-month delay was because of discussions about painting and new carpets for the building.

Like other SIDS organisations around the country, the NSW branch is a keen acquirer of assets. It had (according to its latest annual return) $2 million of the $11 million national kitty which has been built up over the past few years – $8 million in cash, the other $3 million in houses, cars, furniture and equipment.

It also spends considerably more than other charities on fund-raising and administration. Compared with an average of 25 per cent for other charities, SIDS in NSW spends more than 30 cents in every dollar; the figure for Victoria is more than 40 cents; and for Queensland 50 cents.

No other big charity in Australia spends anything like this. By comparison, World Vision, Australia’s largest charity, spends 25 cents in the dollar on administration; the Royal Blind Society 22 cents; National Heart Foundation 19 cents; Legacy 17 cents; the Salvation Army 13 cents and the Royal Flying Doctor Service 12 cents.

In NSW last financial year, for example, the SIDS committee raised about $2 million. It spent $300,000 on administration, and only $30,000 on counselling, education and scientific research.

Money donated to the Red Nose Day appeal in NSW has two lots of costs deducted from it before it can be applied to SIDS research or education. The actual cost of running the national appeal – which is handled by professionals- is 23 per cent. Then the 1991-1992 accounts show another 15 per cent taken out for State administration – a total of 38 per cent.

And, of the money that remains, most of the income for the past two years has been banked or invested in property and equipment. Of the $2.7 million received by the NSW branch, only a third was actually spent on anything – the rest was put in the bank, or invested in property. At December 31 last year, the NSW SIDS Association was sitting on $1.8 million in cash.

The NSW president of the Sudden Infant Death Association, Jeremy Wright, disputed these figures. He said that, since the association’s balance date on December 31, it had increased its spending on education, research and counselling to $800,000 for the year.

The association’s reserves had been run down, and it now had only $975,000 in the bank. Wright said that if the association raised no more money, this would disappear in two years at the current rate of spending.

Wright claimed that the association’s expenses – administration, the cost of fundraising and the “cost of goods” like the plastic red noses – were 32 cents in the dollar, not 38, but said that this was not excessive.

He said that Australia and New Zealand led the world in their work on SIDS, and appealed for more money. “Red Nose Day must continue, or the good work started will come to a premature and abrupt end,” he said.

In Victoria, the SIDS committee is headed by Kaaren Fitzgerald, who, like most committee members, lost a child to SIDS – she founded the branch after her fourth child died in 1977. Fitzgerald presides over an $800,000 complex in the upmarket Melbourne suburb of Malvern, which is the headquarters for her staff of nine full-time, and numerous part-time paid workers.

Fitzgerald says she considers “we have a very effective fundraising”. However, the Victorian accounts show that 40 per cent of the money donated last year – $1.1 million – went on fundraising and administration costs.

Federally, Red Nose Days have raised $15 million in the past four years. A little over $4 million has been spent on research into the causes of SIDS. The rest has been spent on administration or accumulated in cash and other assets.

Elizabeth Bishop concedes that “it’s a fairly new organisation. Maybe we are learning the ropes. Maybe we have some expenses we should not have had…” and pointed to a “humungous printing bill” as part of the problem.

As for the millions of dollars that have been salted away in banks and interest-bearing deposits: “We don’t know how long Red Noses will last, or how long this money needs to last.”

It is little wonder that other charities – particularly during a week with the ravages of the Somali famine filling the TV screens – are jealous of SIDS’s stockpiles of money and of the fact that Federal and State governments have topped this up with some $500,000 of taxpayers’ money over the past four years.

Consider the National Association for the Prevention of Child Abuse and Neglect, the national clearing house for child abuse data and co-ordinator of prevention strategies. In NSW alone last year there were 11,060 cases of serious child abuse, and four reported deaths.

This unglamorous charity operates from an office in Grace Brothers it rents for a peppercorn, and functions with a staff of one part-time secretary. It raised $153,000. Its fixed assets are listed in its current audited accounts at precisely $1.

FIRST, the good news. The number of Australian babies which die every year from what used to be called cot death has halved, following a simple education campaign telling mothers not to lie them on their faces.

Although Sudden Infant Death Syndrome (SIDS), as it is now known, is still the biggest cause of death of babies, the number who die this year will probably be 300 compared with the 600 which was the figure from when records began to be kept back in the 1970s.

According to Dr Mal Wilkinson, of Monash University’s Centre for Early Human Development in Melbourne, this winter has failed to see the usual peak of babies found dead – usually in the small hours of the morning – of unexplained heart and lung failure. The number for the first six months of the year was 155, a record low for every State of Australia.

The dramatic fall in deaths followed the world breakthrough in May 1991 by a medical team in Tasmania under Professor Terry Dwyer, which surveyed thousands of Tasmanian babies over a three-year period – 23 of them died of SIDS – and concluded that lying the baby on its back or side could cut death rates by 40 per cent. TV and print advertising campaigns proved that it did just that – and more.

The bad news is that lying on the face is not the cause of SIDS any more than getting your hair wet is the cause of catching a cold. Scientists around the world have been working for more than 20 years to find out what other factors are involved, so far without convincing success.

Professor Colin Sullivan, the head of medicine at Sydney University, who is running a $1 million Red Nose-funded research program at the Children’s Hospital, Camperdown, says: “There is circumstantial evidence that it is some breakdown in the cardio-respiratory system, but we don’t know the root cause. Any suggestion or publicity that we do is absolutely wrong.”

Over the years, there have been claims that SIDS – it is claimed to have been around since Biblical times – is caused by viral infections, by loud noises, shock, a blood disorder, an enzyme deficiency, PVC gases from plastic-covered mattresses; that tobacco-smoking by parents may contribute … even that 10 per cent of deaths are caused by mothers murdering their babies by smothering them.

None of these causes has proved convincing, nor do any of the products which have been spun off by the multi-million-dollar cot death industry appear to be 100 per cent effective. A UK drug company is marketing a product called Exosurf Neonatal designed to improve the lining on babies’ lungs, and a German company is marketing an $1,100 electronic alarm.

But so far, after all the research that has been done, the only dramatic improvement has been the simple piece of advice – don’t lie your baby on its face.

Red Nose Day: Where your money goes

(1988-1991)

SPENDING:
$5 million – Cost of fundraising
$5 million – Admin (includes salaries)
$6 million – Medical research, counselling, education

INCOME:
Red Nose Days – $15 m
Other donations – $11.5 m
Government – $500,000
TOTAL – $27 m

ASSETS:
$3 million – Houses, cars, furniture, equipment
$8 million – Cash & investments

Publishing Info

Pub: Sydney Morning Herald
Pub date: Saturday 29 August 1992
Edition: Late
Section: Spectrum
Sub section:
Page: 39
Word count: 3166
Keywords: Cot deaths Fund raising Expenditure
Picture: Paul Mathews
Caption: Probationary firemen take part in a previous Red Nose campaign.
Diag: Red Nose Day: Where Your Money Goes (1988)