Family wants an apology from IHC
Richard Heather, who is deaf, blind, intellectually impaired and autistic, was unceremoniously kicked out of his Society for the Intellectually Handicapped (IHC) home after a "relationship breakdown" between the provider and his parents.
Despite a review by the Health Ministry that found IHC's subsidiary IDEA Services had broken its contractual requirements in forcing Richard's exit, the organisation has refused to accept its failures or apologise to the Heather family.
In a move that shocked even the chair of a Human Rights Review Tribunal hearing, IHC also applied for the Heathers to meet the $4000 cost of its participation in the proceedings.
Although the request was denied, the IHC's continuing denial of wrongdoing has unsettled the wider disabled community and exposed an institutional culture where it is deemed too "unsafe" to complain, the family says.
"There aren't a lot of people who will challenge IDEA (Intellectual Disability Empowerment in Action) and IHC because they're intimidating," said Richard's mother Rhonda Heather.
"In our case, it resulted in discrimination against Richard. But we kept going because we believe that families must be able to ask questions about their children's care without feeling threatened."
The long, litigious battle has come at a huge personal cost to the family, which has been heavily involved with IHC since Richard was a child and which dedicated many hours to fundraising on the charity's behalf.
Born in 1971, Richard was diagnosed with congenital rubella syndrome, which meant in those days "deaf, blind and retarded". Doctors advised the family to put their son in an institution and get on with their lives.
The Heathers – Rhonda, her husband David, and Richard's sister Kirsty – refused to take that advice, instead choosing to tough it out. They arranged cataract surgery and cornea transplants, painstakingly taught Richard a little sign language and latterly, how to ride a tandem bike.
For about 22 years, he lived happily in a shared IHC house, returning to his parents' Kapiti home every second weekend.
But in 2005, when Richard was given his first needs assessment and diagnosed as requiring the highest level of care (band five) problems began. The Heathers, concerned their son was not receiving the full amount of care provided for in his package, began to ask questions. Eventually, after David appeared at a select committee hearing, they were referred to mediation.
"After that, we had fantastic support for two years. During that time they really were amazing," David Heather said.
In 2007, however, Richard was reassessed and downgraded to band four on the needs chart. Believing their son had "slipped through the cracks" in a new, computerised system, Rhonda and David again began to ask questions of IHC, including about how the care package was applied, and if they could appeal for discretionary funding to ensure their son would maintain his previous quality of life.
One of the main concerns was that the number of care hours allocated to Richard's house – where he lived with three other IHC clients – were not being delivered.
Documents show the four men were entitled to 194 hours of care, but staff were only rostered to provide 143 hours.
A Health Ministry report says it was suggested, at that point, if IDEA accessed the remaining 51 hours all parties "would have been satisfied".
That did not happen. Instead, tensions and distrust escalated on both sides, threats were made, letters written, requests ignored and finally, at a February 2010 meeting, Richard's advocates – appointed to keep the family out of it – were informed he would be kicked out.
Though the exit had been threatened by IHC before, neither the family nor the Health Ministry appeared to believe it would become reality. It was the first time in at least 20 years someone had been ordered to leave.
"It hurt us," Rhonda said. "And it hurt Richard. He's got a mental age of between 3 and 4 years old. He did not understand why he had to move. He went off to his day programme in the morning and when he came back to his house of eight years there was no furniture in his room."
The Heathers were given a month to find a new provider.
Twelve weeks later, with Richard safely in a new home run by another carer, MASH, they lodged a discrimination complaint with the Human Rights Review Tribunal. Separately, the Health Ministry then agreed to review the exit decision. IHC refused to participate in the review. It also refused to be interviewed on the topic, saying it wasn't in its best interests.
The ministry's report found the relationship between IHC and the Heathers had been "problematic" for about 15 years.
It said Ralph Jones, the chief executive of the IHC, had labelled the family "demanding, difficult and complaining".
On the other hand, it found IDEA had withheld information from the family, did not communicate properly with them, provided misleading information and did not answer Official Information Act requests.
It stated explicitly that IDEA had not followed the proper exit process – that was supposed to be reserved as an absolute, last resort measure. IDEA had also rejected a transition arrangement that could have avoided an unnecessary interim move for Richard while his new home was established.
"In this transition period particularly, they appear to have lost sight of Richard's best interests," the report said.
The ministry also criticised itself for failing to provide consistent oversight and that while the ministry had not agreed with the exit decision, it did not feel able, or was not willing, to challenge IDEA.
For its part, the ministry has offered a full apology with wide-ranging implications – what the Human Rights Review Tribunal called "a comprehensive admission of failings".
"It is a vindication of the untiring efforts of Mr and Mrs Heather to put right a grave injustice," the tribunal costs decision said.
The ministry's national director of services for purchasing, Jill Lane, is now working with the family to ensure a similar situation does not occur again.
"We are very sorry it escalated to the point that it did," she said.
Lane said it was also working with IHC, which had already amended its exit policy. The expectations were clear, Lane said. As required in the report's recommendations, it will create a safe environment with a proper complaints process, she said, where communication is open and transparent.
The Heather family believes that is unlikely to happen, because there have been no formal repercussions for the service. It is more likely, they say, that families will continue to be discriminated against if they complain.
In a letter to the family just this week IHC wrote it still did not accept the conclusions made by the ministry that IDEA was in breach of contract. "The Ministry of Health had no mandate or basis on which to apologise on behalf of IDEA Services or IHC and we have informed them of this fact," the letter said.
It said the Heathers' IHC membership would not be reinstated. They would not get a public apology.
"That just shows they haven't learned anything at all from this experience," Rhonda said.
It was time, she said, that IHC was subject to better scrutiny. She believes their place as the largest provider in a difficult industry has let them off the hook for too long.
"What needs to happen is that other families need to start to ask questions. But they're too scared. They say `look at what happened to Richard Heather'. They don't want to end up like him."
IHC twice refused to be interviewed for this article. It issued a statement saying that commenting was not in its best interests, but that it understood Richard was receiving excellent care from his current providers and was happy in his new home.
- © Fairfax NZ News
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