Halberg Foundation charity pays out only 8% of income to disabled children and clubs

Charlotte Cleverley-Bisman with Cameron Capp (left) and double gold medallist, paralympic swimmer Cameron Leslie. Photo / Nick Reed

Long-distance running legend Allison Roe joins chorus of critics who say disabled kids are being failed

The disability foundation that carries the name of one of the country's sporting legends is under fire for paying out less than $200,000 a year to disabled children and their families - despite raking in more than $2.5 million in revenue.

Management of the Halberg Disability Sports Foundation, named after Olympic gold medallist Sir Murray Halberg, is also facing accusations within the sector that is an ineffective service provider. However CEO Shelley McMeeken said critics misunderstood the role and business model of the foundation.

One of the strongest critics is Pam Cleverley, mother of Charlotte Bisman-Cleverley - once known throughout the country as Baby Charlotte - who had her limbs amputated after contracting meningococcal disease as an infant.

Cleverley said the small amount of grants paid out was damning enough, but the problems with the HDSF ran much deeper.

Some of these concerns were raised in a letter to the Minister for Sport and Recreation Dr Jonathan Coleman in April last year by the founders of disability support group the Chariot Project.

The letter described HDSF as a "money-making machine" and highlights the inequities between what is paid out to staff in wages and what is distributed to the disabled community.

Staff payments totalled $1.2 million for the 2015 financial year.

The authors' points were backed up by an angry Cleverley, who told the Herald on Sunday that she was "banging her head against a brick wall" in trying to find recreational and sports opportunities for her daughter, now 12, but received little help from the foundation.

"I felt really alone. The Halberg Foundation were evasive and no help," Cleverley said. "You begin to question yourself: Am I insane or everyone around me?"

The latest set of accounts for the charitable trust show that they had a total gross income for the 2015 financial year of $2.59m. Of that, just $197,898 was paid out in grants to 362 individuals or clubs, less than eight per cent of revenue. This is in keeping with the previous two years, where grants to individuals and clubs totalled 6.9% and 7.2% of revenue.

McMeeken said grants - which mainly go towards entry-level equipment, lessons and camps - were just one small part of what the foundation provides to the disabled community.

"I look at it this way. Aren't we lucky we have two major benefactors - Eagles Golf Club and Harcourts - who provide this funding that we manage to assist families and break down some of the barriers that prevent young disabled people entering sport."

McMeeken, who was CEO of Netball New Zealand for seven years, said you couldn't separate the staff salaries from their mission to make sport accessible to all New Zealanders with "no exceptions", because the work of nine national advisers and office staff was integral to this.

The national network of staff advised schools and clubs on how to "embed an inclusive philosophy and how to adapt and modify things to make this possible".

Long-distance running legend Allison Roe said she had been made aware of "what parents call a lack of sustainable, regular sporting opportunities for children with physical disabilities".

The Boston and New York Marathons winner is on the Waitemata District Health Board and is on the board of the Wilson Home Trust. She has met many parents who are often frustrated about the lack of regular recreational and sporting opportunities for their disabled children.

Long-distance running legend Allison Roe. Photo / Dean Purcell

"Some of the opportunities appear to be one-off and promotional and therefore not able to provide a really sustainable health and social contact benefit. It appears that no one organisation is able to provide enough for the growing number of children implicated," Roe said.

"The Halberg Trust is seen as an organisation that provides sporting and recreational access for disabled children and the concerns [are] that these opportunities are in reality few and far between. It appears there are grants for equipment and other modalities, but what I am hearing is that parents would rather have ongoing and sustainable sporting opportunities for their children on a weekly basis, as are available to children without disabilities.

"So, yes the concerns of parents are valid."

McMeeken, who has been in the role for just a year, said her organisation was not there to deliver programmes. They do not have the money or capability to do so.

Chief executive of Halberg Disability Sports Foundation Shelley McMeeken. Photo / NZPA

"We don't have $2.5m to spend, we have $2.5m to work with. We can't do everything. We have a limited resource. From time to time we won't get it right," she said, describing the foundation's role as connectors.

"We connect with the families, find places [they can take their children to engage in sport] and then try to make it happen."

If that was the case, say the critics, then more cash should be funnelled into different organisations.

There is a belief in the sector that the HDSF wields too much influence, being the lead agency for Sport New Zealand's No Exceptions funding. There is a growing sense of frustration within the disability sport sector.

"We have repeatedly requested and lobbied for the Halberg Foundation to collaborate with us but that has not been forthcoming," said Hamish Meacheam, the CEO of Parafed Auckland, New Zealand's oldest and largest disability sport organisation.

"I've been in the role for 18 months and we've made very little progress. It seems they're quite happy with how they're going."

Sandra Hickey, co-author of the letter to Dr Coleman, founded the Chariot Project in 2012, in part because of her belief that HDSF is failing its constituents.

The mother of a disabled child, Hickey told the Herald that the foundation was "all heat and no light".

Cleverley said; "Look at their budget. There's ****-all left for [families of the disabled] and meanwhile Charlotte is still on the couch."

Hickey rejects the inclusiveness aspect of the Halbergs work - where they go into schools and sports clubs to advise them how to included disabled interests - saying it was "systems building" for the sake of it and had a negligible effect.

"These kids need disabled-specific sports programmes, not one-off events and photo opportunities."

Hickey was critical also of the foundation's annual Halberg Junior Disability Games, which was attended this year by 113 kids.

"For one child and one caregiver it ends up costing about $500 to attend."

The trust's big moment in the spotlight is the annual Halberg Awards, which McMeeken said the foundation puts together on a shoestring and provides a valuable showcase for their work.

The HDSF has a long list of high-profile trustees including Sir Murray Halberg, who has been battling ill-health in recent years, Grant Fox, Sean Fitzpatrick, Sir John Anderson, Rob Waddell, Sir Brian Lochore, Dame Susan Devoy and Scotty 'Sumo' Stevenson.

According to the Department of Statistics 11 per cent of New Zealanders under the age of 15 have a disability.