Welcome to Part Three of the Interview with Mark Lever, Chief Executive of the National Autistic Society.
This interview was an in-depth and wide-ranging one and the various topics covered will be featured across six parts between 27th April – 2nd May 2015. Please click here to read the Introduction to this interview if you haven’t already.
This part of the interview with Mark Lever focuses on the discussion around Autism Accreditation and the Anthony Kletzander case.
Anthony Kletzander is a 26 year old non-verbal autistic man who communicates via assistive communication technology as shown here in a short clip where he says ‘thanks’ to those supporting his campaign.
Previously Anthony lived independently with the support of two assistants, attended Dublin City university twice a week to study Irish History, was a member of several social clubs and enjoyed attending the gym and roller blading.
Anthony’s advocate Joe Whittaker explains that Anthony was moved out of independent living and placed into a residential institution – at a considerably much higher fee than the cost of independent living – without any explanation being given to Anthony or his family, by The Health Service Executive in Ireland.
Allegations of human rights abuses in the care of Anthony have been made towards made the private healthcare organisation which runs the institution Anthony currently resides in and additional information on this case can be found in an interview with his parents here.
The allegations include the healthcare provider refusing to provide training for the staff at the institution to communicate with Anthony via his light writer and forcing Anthony to instead communicate via “picture exchange” which Joe says that Anthony finds “insulting given his ability to communicate very effectively given the appropriate support.”
Joe explained that “Anthony has motor movement difficulties therefore it is not simply a case of pointing to a given picture to indicate his preference – that is why his typing is so very important to him to direct his life.”
Joe also makes it clear that the people working with Anthony “do not use his communication [and therefore] deny the significance and pain of the sensory invasions he has as an Autistic person.”
In addition, education is very important to Anthony and he receives no formal education in his current residence and is instead required to attend ‘day service’ on a farm run by the healthcare provider.
How does this involve The National Autistic Society?
The National Autistic Society (NAS) receives approx. £1.2m in revenue per year from Autism Accreditation of 500+ facilities who provide autism services.
Providers who utilise the Autism Accreditation service are referred to internally by the NAS as ‘clients’.
Autism Accreditation issued by the NAS review process has no statutory or regulatory powers. The text on the NAS website promotes the Autism Accreditation service as follows:
“The Autism Accreditation award provides a seal of quality and can give people peace of mind when choosing a service for a relative or friend.”
As a result the Autism Accreditation ‘seal of quality’ is used by organisations on their marketing materials when selling/promoting their autism services.
What happens if a complaint is made?
As the NAS are promoting Autism Accreditation as a ‘seal of quality’ for the residential facility, school or other service which purchases it, significant issues are caused when a user of a service has a complaint with a provider whom the NAS have provided Autism Accreditation to, as the NAS has the following policy of dealing with complaints:
“The [Autism Accreditation] review team is unable to consider as evidence towards accreditation, unsolicited information provided by a third party outside of the review process. Autism Accreditation has no jurisdiction over the services that volunteer to be registered, and persons who have concerns about a service may be best advised to follow the complaints procedure of that service provider.”.
What this means is the NAS provides a ‘Seal of Quality’ which providers can use to attract new clients to their services, however – if a client attracted by the NAS Autism Accreditation ‘Seal of Quality’, has a bad experience with the service provider and wants to file a complaint with the NAS as they accredited that service – the NAS declines to hear the complaint and instead makes it clear that it has ‘no jurisdiction over the services that volunteer to be registered’.
Whilst the NAS doesn’t accredit the institution Anthony lives in, the NAS has accredited five other institutions run by the same healthcare provider and Joe explains that the healthcare provider “used AA [Autism Accreditation] from NAS as a general kitemark on their website for almost two years before we informed NAS in December 2014, when [organisation name removed] started to specify 5 centres.”
The NAS also provides Autism Accreditation to the residential facility housing the farm where Anthony was made to do ‘day service’ five days a week which his parents have said involved the completing of tasks akin to unpaid labour which he found incredibly distressing including being made to shovel the manure of the animals on the farm.
Shortly after the protest the NAS made a long-awaited public statement on Anthony Kletzander calling on the The Health Service Executive (HSE) in Ireland for “an independent assessment of Anthony’s needs, which should also constitute an inquiry into allegations of abuse.” (Click here for full Statement).
The following month after the NAS made this statement the HSE confirmed they would “fully support Anthony’s return to sustainable independent living.” – as explained in more detail on the DPAC website here.
Whilst this is a huge success for Anthony and his supporters a few key questions remain of the NAS:
- Why did it take nine months of campaigning and a protest at their awards ceremony to get the NAS to make a formal statement calling for an independent enquiry?
- Why have the NAS repeatedly declined to visit Anthony to hear his concerns about his treatment at the institution despite being invited both by the parents of Anthony and the healthcare provider?
- Do the NAS think there is a conflict of interest when the NAS considers an organisation who has paid for Autism Accreditation a ‘Client’ – as opposed to the Client of the NAS being the autistic person and their family making the allegations of abuse against the organisation?
- Do the NAS think it’s right that they continue to offer Autism Accreditation in areas where they have no jurisdiction?
This part of the interview attempts to address the above questions.
Mark Lever, Anthony Kletzander and Autism Accreditation
Note: The below part of the interview has been heavily edited for legal reasons.
Lydia: “On your website it says that your Autism Accreditation programme provides an ‘autism-specific quality assurance programme for hundreds of organisations throughout the UK and across the world.’ Can you tell me how the actual Autism Accreditation process works?”
Mark: “Yes a number of…for different types of autism establishments – schools, residential services, outreach – not necessarily people linked to the NAS but an independent panel developed a series of standards against which they think good autism practice should be judged.
And then there is a peer review network, so members of other organisations who are trained go in and review organisations against those sets of standards. It was initially developed as a developmental programme so that people who were looking to set up a service or people who were looking to improve their services received feedback from peers on how their services could be improved.
And then when they hit standards as judged by a peer review and by a review panel made up of not employees of the NAS but the panel we put together, they would get that Autism Accreditation kitemark.
But it’s not for organisations as such it’s for individual services, so for instance all of our…most of our services have it, but it’s not ‘one organisation gets it as an organisation’, it’s for each of the individual services that they put forward for Autism Accreditation.”
Lydia: “Am I right in saying that the NAS accredits over 300 – is it 300 or 500 client organisations now?”
Mark: “Probably nearer to 500”
Lydia: “So, around about 500 organisations annually and generates over £1m in revenue a year?”
Mark: “I’m not sure it’s £1m, I mean it doesn’t…I mean I can tell you exactly what…on Autism Accreditation what I tend to do is the money that’s generated from Autism Accreditation gets re-invested back into developing online products but I think the…”
[Mark then goes over to his computer and starts looking through papers for the financial statistics relating to Autism Accreditation. He doesn’t find them and returns to the table]
Mark: “In terms of the surplus that’s made from Autism Accreditation…”
Lydia Interjects: “Sorry I was just talking about actual revenue rather than profit…”
Mark: “…I can let you know”
Lydia: “Ok. Because if it’s a few thousand pounds a time…500 organisations who may have multiple sites…that would just be my assumption is that it’s going to be round about £1m.”
Mark: “I can…I just don’t want to quote a figure and…[it not be accurate]”
Lydia: “Yeah, no that’s fine, but approximately if you’ve got 500 and it’s a few thousand pounds each and they’ve got multiple [services], I’d be surprised if it’s not around about that figure”.
Editorial Note: Following this interview the NAS confirmed that Autism Accreditation generates around £1.2m in revenue annually and the annual registration fees range from £1800 – £2800.
Lydia: “What would you say if someone said that the NAS was slow to respond to the Anthony Kletzander case because [name removed for legal reasons] are a private company client of the NAS who pay a lot of money for you to accredit their institutions?”
Mark: “I think…there’s obviously been a lot of communication going on about the Anthony Kletzander case. Our view on that is that the answer for Anthony to get the best possible care is for the commissioner in Ireland, the family, Anthony and [facility provider name removed for legal reasons], to get together round a table to do that.
It is probably not…the best way to do it is probably not to try and have a big social media campaign about it I think. So behind the scenes we arranged for an independent mediator to try and make that happen, now our own understanding is we think that independent mediation broke down.”
Lydia: “Well, I was going to say where does the NAS stand because I hear there’s some sort of statement pending – what is your official view?”
Mark: “Our official position is that there should be an independent review and there needs to be an independent assessment of Anthony’s needs”
Mark: “Just out of interest, where Anthony lives is not accredited…”
Lydia: “Yeah, I’m familiar with that. But the organisation have got several institutions accredited with…[the NAS Autism Accreditation service]”
Mark: “They have yeah”
Lydia: “…which is where that’s come from.”
Lydia: “Do you think it’s a conflict of interest that the client of the NAS in these situations is not the autistic person that’s alleged to have been abused, but the organisation who runs the facility because they’ve paid the NAS a large sum of money to accredit other institutions if not that one directly?”
Mark: “Interesting point, I mean we treat…we try and…we do all we can to maintain that independence and in fact Autism Accreditation accredits NAS services and doesn’t always accredit them, and suspends their accreditation internally so…where you think there might be an even greater conflict of interest.
We try and keep Autism Accreditation at arm’s length as much as we possibly can and that certainly wouldn’t…if there are allegations of abuse we wouldn’t think ‘oh we’re not going to mention that because we accredited them’…our primary concern is the individual, always in our services, not the fact that [there is an] accreditation.
So I say in terms of the money that’s actually generated, it’s not massive…”
Lydia: “Well is it true that [organisation name removed] offered you the opportunity to visit Anthony and you declined it?”
Mark: “…we…I don’t…I mean certainly Linda asked us to go and see him, but we said actually ‘we can’t do anything about it’, I mean its…”
Lydia interjects: “The [organisation name removed] didn’t actually offer you [the NAS] the opportunity?”
Mark: “I don’t know if they did…I think they may have, they may have made that invitation to Carol [Povey, Director of the NAS Centre for Autism], to go and visit.”
Lydia: “Because I definitely have information that someone [was sent an invitation]”
Mark: “If that’s a reliable source then they probably did, but I mean our point is that we can’t do anything about it”
[The NAS later confirmed that Carol Povey Director of the NAS Centre for Autism received an invitation from both the healthcare provider and Anthony’s parents and declined to meet Anthony – full statement below]
Lydia: “Then nobody visited, that’s the thing, nobody went to see…”
Mark interjects: “Oh our Autism Accreditation team went in and did an interim assessment”
Lydia: “But did they actually go in and meet Anthony?”
Mark: “I don’t think so because he’s not in an accredited facility”
Lydia: “Exactly, so that’s where the confusion is, so when you say that they ‘went in and did an interim accreditation’ – which they then passed with positive feedback – that’s where it gets confusing, because nobody’s actually been to see Anthony.”
Mark: “No, no [they haven’t]”
Lydia: “So, just because you said [previously] that you ‘put the individual first’, but no-one’s actually seen Anthony”
Mark: “But I think our point is that we’ve got no jurisdiction over…I mean what we think should happen is there does need to be…and we absolutely think and I’ll say this – there should be an independent review into the allegations which have been made, and that there should be an assessment of need but it’s…the authorities in Ireland have got to do that and we can’t do that, we’ve got no jurisdiction at all to do that.
That’s not hiding behind anything…that’s just the fact. If er…to be honest with you, if we thought we could do it, if that would transform things we would, but it just wouldn’t.”
Lydia: “That’s the thing is that last week there was a protest outside your awards ceremony…”
Mark: “And we spoke to Joe [Whittaker – Anthony’s advocate] and to Linda [Anthony’s mother]”
Lydia: “And a statement on the NAS website which was kind of critical of the protest. It did say ‘we feel maybe an unproductive protest given our lack of involvement in Anthony Kletzander’s care and the National Autistic Society lack of authority in the Republic of Ireland’, which is what you’ve just touched on there. So what concerns me here is the comment that the NAS has a lack of authority in the Republic of Ireland – which is of course true – raises the question of ‘well if you have this lack of authority what on earth are you doing going in and accrediting these services?”
Mark: “Yeah…I think that it’s a different thing. If you’ve got a…I mean we’ve got no statutory or regulatory authority, we have merely got an accreditation scheme that people then buy into…and the standards of that accreditation scheme are upheld whether its here or whether its in the Republic of Ireland. So it’s not a statutory or regulatory obligation on their part.”
Editorial Note: During the interview I asked Mark the following questions on behalf of Anthony’s advocate Joe Whittaker. Initially Mark tried to avoid answering them saying he had answered them previously and that he was in contact with Joe ‘daily’. I insisted on asking them as Joe had sent them to me that week and clearly felt they had not been adequately answered before.
Questions asked on behalf of Anthony Kletzander’s Advocate – Joe Whittaker
Lydia: “Why was [name removed for legal reasons] awarded a positive review of their Autism provision, in October 2014, without any reference whatever to the allegations of abuse against Anthony Kletzander, which NAS were made aware of six months earlier?”
Mark: “Because the services met the Autism Accreditation standards.”
Lydia: “How have the NAS heard the voice of Anthony?”
Mark: “We’ve taken the allegations that Linda has made seriously. We have reported those to the HSE and asked for an independent review.”
Lydia: “Do the NAS acknowledge any responsibility for what Anthony Kletzander is being subjected to at [name removed]?”
Mark: “The responsibility for Anthony’s care is with the service provider and service commissioner.”
Editorial Note: After the interview Joe confirmed the following:
“I do not speak to Mark daily. I have spoken to him once on the telephone. I send him regular updates on the campaign. We had [a] face to face exchange at the protest, with Carole Povey [Director of the NAS Centre for Autism] and Anthony’s mum Linda.”
What Happened Next?
During the Interview: Mark was uncertain whether or not an invitation had been extended to Carol Povey [Director of the NAS Centre for Autism] for the NAS to meet Anthony.
After the Interview: The NAS confirmed he following:
“Anthony’s parents invited the NAS to come and interview Anthony on 2 September 2014. At that point we explained our position: that the only possible solution lay with productive joint discussions between everyone involved. In October we introduced the parents to an independent mediator to support this aim and understand that they pursued this contact. We were not directly involved with this process, so are not clear about the outcomes.
[Organisation name removed for legal reasons] made an open invitation to Carol Povey to visit from when we first contacted them to let them know about the correspondence we’d received about Anthony, at the end of July 2014.
We have always declined invitations from both [Organisation name removed] and Anthony’s parents to visit Anthony as the NAS has no authority in relation to this case in the Republic of Ireland. Our aim remained always to redirect everyone who was directly involved towards joint discussions. “
During the Interview: Mark mentioned that “Autism Accreditation accredits NAS services and doesn’t always accredit them, and suspends their accreditation internally”.
After the Interview: The NAS confirmed the following:
“Autism Accreditation was suspended at one of our schools in 2013, prior to its closure as a school and conversion into an adult service. That service is now working towards Accreditation.”
During the Interview: Mark commented “We try and keep Autism Accreditation at arm’s length as much as we possibly can”
After the Interview: Whilst the actual accreditation review panel may include some external members, the NAS states on its website that it directly employs 15 members of staff in its internal ‘Autism Accreditation department’ – including ten Autism Accreditation advisors who work around the UK.
Anthony’s Thank You Video
Click here to see a short video clip of Anthony using his light writer to thank those who supported his campaign for independent living [clip will open in new window].
PART FOUR OF ‘AN INTERVIEW WITH MARK LEVER’ WILL BE PUBLISHED TOMORROW
Part four looks at The Language of Autism: An assessment of the conflicting findings of the NAS language survey.
About the Author
Lydia Andal is an autistic campaign journalist and author who draws attention to the issues affecting under-represented parts of society.
Lydia’s new book ‘Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults (Digital Edition)’ is available to order now at all major digital bookstores with the print edition scheduled for Autumn 2015.
Lydia grew up in Essex before graduating with a 2:1 Degree in Business & Entrepreneurship and relocating to Manchester where she worked in the corporate sector before setting up her first business age 23.
Lydia is an Ambassador for Potential Plus UK gifted children’s society which works to highlight that giftedness only represents potential – without special support many gifted children never reach their full potential in society.
FREE PREVIEW VIA AMAZON
You can read the opening section of ‘Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults’ at the Amazon Kindle Store (UK).
FREE AMIAUTISTIC.COM NEWSLETTER
Sign up here to register for an update on when the print edition is launched as well as occasional updates on future editions and notification when relevant autism-related news items or features are added to the site.