May 182014
 

Disabled people have long been oppressed by professionals saying they’re acting in our ‘best interests’ as an excuse to maintain their own interests. One of the latest is their ‘take’ on facilitated communication, used by many across the world to express their voice if they do not have speech. FC is the use of a keyboard on which the user types what they want to say see the great piece written by the brilliant Quiet Riot

FC device being used to buy ice cream

communication board in hand doing ordinary things like buying an ice cream. This does not require a “transition plan” or “a service delivery audit” Or a specialist training programme to create a team of ” Whippy Therapist”

Some claim FC is incorrect and shouldn’t be used. DPAC fundamentally disagrees and fully supports FC. But, of course keeping people voiceless is much more profitable for ‘professionals’, charities and other groups whose livelihoods and/or donations often depend on our oppression and on keeping us powerless and silent. This has been evident throughout disabled peoples’ history.

Imagine the loss of contracts, work they get to psycho – analyse us. The lesser need for speech therapists, researchers, psychologists, service providers and academics,and the drop in donations to pay top salaries to their charity directors if we develop our own challenging voices-of course its in their interests to deny any method that empowers our voice if it renders them obsolete!

All those denying our voices through which ever means we chose to express them are violating our human rights as set out in the United Nations Convention on the Rights of Disabled Persons (UNCRPD) which argues we have a right to use any method we chose for communication including FC and that this should be respected and accepted. But in the so called disability business (i.e those who make money from us and from maintaining our oppression) profit speaks louder than human rights.

Please see below to find out how this can happen when the vested interests of ‘professional power attempts to overturn human rights…….

The ISAAC attack on the Communication used by Increasing numbers of Disabled People.

The International Society of Augmentative and Alternative Communication (ISAAC) released a “Position Statement” on facilitated communication (FC) on 23rd April 2014 to its international membership.

Along with theposition statement on FC, ISAAC finally issued the identities of the ad hoc committee, who were selected to deliver the statement. The majority of the committee had publicly condemned FC prior to joining the committee. Therefore, the condemnation of FC following their deliberations was the expected outcome.

The ISAAC ad hoc committee used flawed methodologies, collected biased data to support an unexplained hypothesis and cited highly selective references to create a spurious position statement on FC.

However, most significantly the committee refused to consult with disabled people who use FC. ISAAC had identified just one disabled person who was a member of this committee but this person did not use FC.

The remainder of the committee were Speech Therapists, Researchers, Psychologists, and Academics. There was no representation of people using the communication they were writing a “position statement” on. Such oppressive practice has no place in an organisation established supposedly to support a persons right to communication.

Rosemary Crossley (the founder of FC) alongside many disabled people using FC, had made many, well received presentations to large audiences at ISAAC events. Now following the work of the ad hoc committee FC, as a method of communication for increasing numbers of disabled people, has been dismissed as invalid.

This outcome appears to have been contrived to protect the power of professionals and academics whilst ignoring the rights of communication for disabled people using FC .

ISAAC have not established committees to create position statements on other alternative means of communication accepted within ISAAC ; Picture Exchange Communication System.(PECS), Rapid Prompt Method (RPM). This is another indication of the deliberate attempt to isolate and devalue FC by a group of professionals and academics whose status and “expertise” is seriously challenged by the authentic voice of disabled people.

Such an approach by ISAAC management requires the subjugation and acquiescence of disabled people and is an abuse of professional power.

This abuse of power and from professionals is being seriously challenged by large numbers of disabled people and their allies. Similar resistance to protect academic vested interests was used to stop the introduction of sign language and Braille and it took major struggle from Deaf and Blind people with their allies to overcome such oppressive practice.

ISAAC and it’s associated chapters state that:

The International Society for Augmentative and Alternative Communication (ISAAC) works to improve the lives of children and adults who use AAC. (Augmentative and Alternative Communication). ISAACs vision is that AAC will be ! recognized, valued and used throughout the world. ISAACs mission is to promote the best possible communication for people with complex communication needs.

 By dismissing a valued means of communication ISAAC management are devaluing hundreds of their members and in doing so fundamentally undermine the ISAAC  mission statement.

This position statement has given a licence to “hate speech” about FC which cannot go unchallenged. The ISAAC committee have excluded a section of their own membership because they use FC. I invite members of ISAAC to demonstrate their protest at such an abuse of power and an abuse of thousands of disabled people around the world.

“The only thing necessary for the triumph of evil is for good men (and women) to do nothing” Edmund Burke.

 Adam Barrett

BA (Hons), PGCE, MEd, FC Trainer.

 

Dec 162013
 

With many thanks for all your great support……

On Friday 20th December 2013 Anthony was moved with his families agreement, by HSE, to a temporary accommodation. We will update you in due course as to how this accommodation works out. Anthony’s parents and sister visited Anthony in his new accommodation and Anthony typed “I am delighted to be out of that place”

Anthony’s Case Conference.

The farcical case conference, about Anthony Kletzander, at Redwood Institution ( run by the Talbot Group a private residential care company ) in Stamullin, Ireland on the 18th December 2013 really did have to be experienced to be believed.

In relation to Anthony Redwood’s practice is opaque and communication jargonised amongst consenting professionals. This is discreetly managed behind, closed doors!

I accompanied Anthony’s mother and sister for Anthony’s Case Conference, there had been no formal agenda nor any indication of professionals to be in attendance, prior to the meeting. We asked for Anthony to join us.

“We can’t have Anthony at the meeting because it is a professional meeting” firmly stated Ann Jackson, psychiatrist with Redwood,

“Anthony, is not invited to this meeting” said The Disabilities Manager, Geraldine Murphy from HSE, she continued ” Anthony can come in and hear what judgements have been made later”

We stated that we would not meet without Anthony presence and his participation.

Ann Jackson, said;

“Anthony would be overwhelmed by such a large gathering” We suggested, they should ask Anthony directly.

“Absolutely, not!” one of the growing number of professional suggested “these are clinical recommendations”.

We repeated we will not be attending any meeting without Anthony. With no sense of irony the Psychiatrist Ann Jackson exclaimed!

“We are a person centred organisation”

The Director of Redwood tried to usher us into the conference room, we repeated;

“Nothing about Anthony without Anthony”

If Professionals gather like a pack! Then if you critically question their status, and power by refusing to concede their dictates you are accused of ” bullying” “being aggressive” ” being intimidating”, “raising your voice” “finger pointing” individuals – this was the chorus from Redwood professionals. Psychiatrists, Psychologists, therapists, Managers and Directors all gathered around the three of us.

It is amusing that I was labelled as intimidating, because we refused to follow their instructions, when their offensive message, to a mother, that her son, was not allowed into his case conference was presented as reasonable.

One psychologist Ronan Gibney, then suggested Anthony be allowed into the meeting on just one condition: Anthony would

“not be allowed to use his communication light writer”

Ronan Gibney, said “his team” decided Anthony’s communication was not “credible”. I asked what evidence he had for making this judgement, since he had not observed Anthony type. He was unable to give a credible response.

There were about 15 professionals at the case conference, However, Anthony would not be present or be heard. We were there to listen to their conclusions.

Why would Redwood want to silence Anthony? If, in their words, Anthony’s communication “lacked credibility” It is because Anthony has been very clear and consistent in his communication that :

His dairy and gluten free diet stopped at Redwood.

Risperdal given despite pleas from his parents and the fact that his Family doctor advised of possible adverse reactions. All ignored by Redwood (still no formal explanation or apology from Redwood or HSE about Anthony’s emergency admittance to hospital, two days after Anthony’s parents met Ronan Gibney and following a series of seizures, days after he was given the medication. Anthony was still being given the antipsychotic medication at Rewood) Anthony never had seizures before and the hospital records which the family attained from their family doctor stated that Anthony did not have epilepsy. So what caused the seizures???

No one was prepared to use Anthony’s communication aid at Redwood ,despite it having been accepted, by Dr Corinne Pearson,Clinical Director at Redwood, in a conversation with Anthony and his parents prior to Anthony’s admission to Redwood.

Not surprisingly Redwood professionals are denying the very communication aid from which Anthony could describe in detail his experiences. Therefore, by dismissing Anthony’s voice as “lacking credibility” they continue to disguise their treatment of Anthony.

I stated to Redwood assessment team I was calling the response to Anthony as abusive, they were aghast that anyone could think such a thing let alone name it.

They asked me to leave the premises. I declined their offer. They said they would call the guards (police) I said I would wait. The police arrived, we went into a side room. We detailed events, I made a charge of abuse of Anthony to be formally noted. My allegations were recorded by the police.

Anthony’s mum was told the following day that Anthony would be discharged from Redwood immediately, back to the “care” of HSE, given that Joe Whittaker had made such an outrageous charge of abuse against Redwood.

We have no idea what the Redwood team had concluded in their reports. We know Redwood decision was made before the family arrived without Anthony being able to hear or comment on their judgements. The need for the family to comply in such a meeting would have given legitimacy to this illegitimate denial of Anthony’s rights. This we judged was why Redwood was desperate for the family to give Redwood procedures legitimacy.

How can any report, written by 15 or more professionals, regardless of their competence or academic qualifications, written about another human being, have any credibility if the voice of that human being has been denied during the compiling of that report?

The HSE insisted on and commissioned this spurious and unnecessary assessment of a young man who has been, drugged gagged and disorientated by damaging diet, at Redwood. An assessment that could have been conducted, over a couple of hours with Anthony, using his means of communication, who has consistently stated that he wants his own apartment, his own staff and attend university, as he had done before. HSE imposed this damaging assessment and turned Anthony’s life upside down.

Our immediate objective is to press HSE with Anthony to put in place Anthony’s legitimate wish to live independently.

In the long term it is important to press for a full and independent investigation into the treatment of Anthony at Redwood.

We will be contacting Kathleen Lynch, Minister of State with responsibilities for Disability, Department of Health ( kathleen_lynch@health.gov.ie ) to ask her to initiate an independent investigation. However, when we said to Sheila Marshall from HSE that this would be our next action, she shrugged and said that any representation to the minister would simply come back to HSE. We also have to challenge the implication of such a complacent comment.

Joe Whittaker
21st December 2013

Anthony is a young man of 25 and was living in his own rented apartment in Dublin for almost three years after many years of struggle. Anthony was enjoying the lifestyle he had chosen. This is the life of many young men at 25. However, Anthony has the label of Autism; he does not use speech but communicates very well by typing on his lightwriter.  Anthony has made many presentations to groups of disabled people in Ireland and the UK describing his struggle to get his independent life style.

Anthony had his own 24/7 paid personal assistants, funded by HSE (National Health Service of Ireland) Anthony was very active and very healthy, his parents had supported him all his life, they worked extremely hard with committed professionals from around the world to ensure he had an appropriate, well balanced gluten and dairy free diet with plenty of exercise, regular running along the beach near Dublin and physical activity in the local Gym. In addition, for a number of semesters, Anthony was attending classes at a University in Dublin; this was the highlight of his week.

Anthony’s chosen life style was brought to an end when Áiseanna Tacaíochta (AT Network) based in Dublin took over responsibilities for Anthony’s support package, without Anthony’s consent, within 8 months the support was so inappropriate for Anthony that he was forced into Redwood Extended Care Facility, Stamullenfor a period of “assessment”

 

Anthony had already had 20 years of being assessed by professionals. But many people will know that for disabled people ineffective professionals don’t accept previous assessments they set about insisting on more and more expensive and intrusive assessments, often to underpin their initial  prejudice. The irony of this ridiculous situation is that had the Senior Management at HSE had the wisdom to sit down with Anthony for a couple of hours and listen to him, they would have all the information they required.

Within three days of being in Redwood for “Assessment” Anthony was given Risperdral an antipsychotic medication and taken off his gluten and dairy free diet. Anthony made it clear to his parents that the “medication made him feel ill and very strange”. Anthony’s parents immediately protested to Redwood. They even had written evidence from Anthony’s GP of 15 years that the Risperdral medication could cause adverse reactions and his gluten and dairy free diet was essential to maintain balance within his body metabolism. Redwood refused to accept these representations, even when Anthony typed “make them stop giving me this medication”

Anthony’s parents met with Clinician at Redwood and again Redwood refused to accept their concern. Within three days of this meeting Anthony was admitted as an emergency patient to  Drogheda Hospital, after having had several seizures. (Anthony had never experienced seizures before entering Redwood. After his stay in hospital Anthony was returned to Redwood where they continued with the same antipsychotic medication and kept him off his special diet.

Anthony is denied his preferred communication at Redwood 

Dr Corrine Pearson, clinical Director at Redwood stated:

“when Anthony is using the lightwriter that he is not always looking at the keyboard whilst continuing to type a message.  As a team this raises concerns about the validity of Anthony using the lightwriter to communicate

This demonstrates a total lack of understanding of Anthony’s use of his peripheral vision when typing on his keyboard, common with many people who experience autism, but more importantly a blatant denial of Anthony’s right to use his preferred and essential means of communication, which he has used for over twelve years.

 On the 18December 2013 there will be a case conference of staff from Redwood to decide on Anthony’s future placement. Anthony’s voice will not be heard at this meeting. There is every indication that they will be recommending that HSE place Anthony in a residential institution attached to Redwood, using the same regime. 

I would urge you to contact Dr Corinne Pearson at Redwood and Geraldine Murphy at HSE in Dublin, Disability Manager and protest at this abuse of power, even a short message will help and show your concern for Anthony.

The more people speak up for Anthony, the more they will hear his voice.

Please continue sending the email until you get a meaningful response.

Please feel free to write your own detailed letter to Redwood and the HSE.  However, for those people who want to make a quick response I would suggest the following:

Dear Dr Pearson and Ms Murphy,

Re: Anthony Kletzander 

Please explain why you continue to give Anthony medication against his wishes and have stopped the diet essential for his wellbeing? 

Anthony is clear that he wants to live in his own rented accommodation with his own personal support, which he has already experienced. 

Please explain to me why Redwood and HSE are denying his human rights to direct his own lifestyle? 

Yours etc

Can I also suggest you copy your email to The Director of Redwood and Senior Officer at HSE, Anthony’s TD (Irish MEP) and me so I can monitor the effectiveness of this campaign? Emails below

Please circulate this information to as many people and networks that you know who will be disturbed by its contents. This denial of Anthony’s human rights cannot be allowed to continue for Anthony or for any young person in Ireland.

Thank You

Joe Whittaker

Friend of Anthony.

Please email:

Dr Corinne Pearson: Clinical Director at Redwood.
corinne@talbotgroup.ie

Geraldine Murphy: Disability Manager at HSE Dublin

geraldine.murphy1@hse.ie

Copies to

·       Director at Redwood

frances@talbotgroup.ie 

·       Sheila Marshall

        Director of HSE

        sheila.marshall@hse.ie 

·       Anthony’s  MP

Finian.mcgrath@oireachtas.ie 

·         Joe Whittaker

Whittakerjoe5@gmail.com

There is also an e- petition

https://www.ipetitions.com/petition/help-anthony-kletzander?utm_medium=email&utm_source=system&utm_campaign=Send%2Bto%2BFriend