A major UK disability charity is coming under increasing pressure for refusing to criticise an Irish care organisation accused of breaching the human rights of a young disabled man.
Disabled activists in the UK, Ireland and across Europe have been vocal in criticising the Irish health service and care organisations for their treatment of Anthony Kletzander, but are furious at the National Autistic Society’s (NAS) failure to intervene in the case.
Kletzander previously studied history part-time at university and lived independently in Dublin, with 24-hour support, visiting the gym and local restaurants.
But when a new organisation took over responsibility for his support, he was moved to a large institution, placed on anti-psychotic medication against his will, and taken off his gluten-free and dairy-free diet.
Within days, he was admitted to hospital after a series of seizures. He was also no longer supported to use the light writer he uses to communicate.
In December 2013, he was moved to another institution, this one run by Nua Healthcare, in County Kildare, and has since been admitted to hospital on two more occasions.
Last September he was moved to a second Nua institution, also in County Kildare.
Throughout the moves, he continues to be funded by the Irish government through the Health Service Executive (HSE).
His family say he is not allowed to use a lightwriter to communicate, is forced to work on a farm – which he hates – is still deprived of his dairy- and gluten-free diet, and is still being given anti-psychotic medication against his wishes.
He has pleaded to be allowed to leave the institution and to return to live independently near his family.
But despite campaigners pushing NAS repeatedly to intervene in the case, the charity continues to provide Nua with accreditation under its international award scheme.
NAS even carried out an “intermediate” review of some of Nua’s services last October, and – according to Nua – reported “sustained good practice”.
Details of its accreditation have also been sent to families with relatives in Nua institutions, to reassure them about standards of care, in the wake of a shocking television expose of alleged abuse at an Irish state-run care facility for adults with learning difficulties, in December 2014.
Although the institution where Kletzander is now living was not one of those accredited by NAS, the farm where he has been forced to work during the day was inspected as part of the accreditation process, and Nua parades its NAS accredited status prominently on its website.
At one point, Nua was set to sponsor one of the awards at NAS’s annual event for autism professionals, but the two sides decided to “terminate discussions” about the sponsorship last year because of the Kletzander case.
Now those campaigning for Kletzander to be allowed to return to living independently in Dublin – the family have already arranged a provider which would support him – are to hold a protest outside the NAS awards ceremony, in Harrogate, on 3 March.
Neither Nua nor HSE will be represented at the ceremony.
Anthony’s mother Linda, who will travel from Dublin to take part in the protest, told Disability News Service: “We thought he would be in there temporarily and then he would get independent living.
“Now it is like he is in prison… a life sentence. It is totally against his human rights. It is very, very frightening. We are just so worried about him.”
She added: “He was a very social person and now they are destroying him. When we see him he is begging us to get him out of Nua and begging us to get him off the drugs.
“I am just broken-hearted. We have asked NAS to meet him and they couldn’t. I think we have asked them twice. I just feel they couldn’t care less.
“They are an organisation for autistic people and they are accrediting Nua, even though they know [about the allegations concerning her son].”
Jamie Bolling, executive director of the European Network on Independent Living (ENIL), which has backed the campaign to return Kletzander to independent living, said: “ENIL supports Anthony and wants to see Anthony access his human rights.
“No one should be forced to live in an institution. As per article 19 in the UN Convention on the Rights of Persons with Disabilities, which unfortunately Ireland has not ratified, people are to have choice on where they want to live and how they want to live. They are to choose their support services.
“It is a crime that a guy who has been able to attend university, today is kept against his will to work on a farm.”
Debbie Jolly, a member of the steering group of Disabled People Against Cuts, which has also supported Kletzander prominently, said: “The fact that NAS refuse to engage with Anthony’s ongoing abuse is completely unacceptable.
“NAS wash their hands of Anthony pleading they have no connection with Ireland, but they are supporting the very institution [responsible for Kletzander’s alleged abuse] in Ireland with an accreditation.
“Once again we see how the big disability charities reject the notion of individual rights for organisational gain – the chant of rights not charity has never been more apt.”
She said that Kletzander’s treatment had been “instigated, condoned and then ignored by a collection of organisations and statutory bodies, all of which must also be called to account”.
Jolly added: “NAS and their guests, on 3 March, should be dealing with the [allegations], not patting each other on the back or giving each other awards while they callously disregard the… realities of Anthony’s life and that of many others.”
Although Mark Lever, the NAS chief executive, has offered to meet Kletzander’s family, his supporters say there is no point having such a meeting unless the charity is prepared to suspend its accreditation of Nua while the allegations are investigated.
Carol Povey, director of the NAS Centre for Autism, said the charity continued to offer advice on how Anthony, his family, Nua, and HSE can “come together, as they alone are able to find the best solution”.
She said the protesters had “a legitimate right to make their concerns heard about Anthony’s care”, but “neither the NAS nor guests at this event to celebrate good practice in autism are justified targets”.
NAS said it contacted HSE last year – when it heard about the case – to “confirm independently that [HSE] was aware of the complaints of abuse, and asked for details about if and how the complaint had been resolved”, as well as introducing an “experienced independent mediator” to his parents.
An NAS spokeswoman said the charity’s accreditation system might now take into account the concerns about Kletzander being forced to work on the farm.
She said: “Good practice is about making sure that people make positive choices. It is an indication that something is amiss there.”
When asked why Lever would not ask Nua if he could meet Kletzander, she said: “Because we don’t think we are a part of this.
“We think the people who are actually going to change the provision, if it is not right for him, are the authorities in Ireland.
“We have to stick to our version of how we bring about change. We just don’t see that as our role.”
She added: “Commissioners [HSE], clinicians, his family and Anthony are the only people who can determine his care and support.
“We can only advise on potential ways to bring these bodies together, as we have continued to offer to do.
“We really do want to get the HSE moving. We thought they had been moving.”
An HSE spokeswoman said: “The HSE is not at liberty to discuss individual cases. The HSE do wish to note that this is a complex case and the HSE have been in continuous communication with the family in relation to Anthony’s needs.”
But Linda Kletzander said that HSE was no longer in touch with the family since the executive “broke” a mediation agreement.
She added: “They refuse to listen to us or Anthony and he remains incarcerated in Nua.”
19 February 2015