NAS drops Nua Healthcare sponsorship of award

I received this response from the Chief Exec of NAS this morning:

Thanks for your letter - as you can imagine we are receiving many such letters.  The response we have drafted is as follows

The NAS is currently in discussions with Nua Healthcare about sponsoring one of our Professionals Awards, although nothing has yet been agreed. Our full statement about the issue (copied below for ease of reference, ZT), which explains why it would be inappropriate for us to comment further, is on our website.

I'd be happy to discuss further on the phone if you have any time towards the end of next week.

The important point that is being missed here is that we haven't agreed a sponsorship deal with them and we won't until we are satisfied with their and the HSE's response to the issues being raised.

Hope this helps

Mark

NAS statement on their website

The National Autistic Society’s Professionals Awards play an important role in highlighting and encouraging best practice in autism services. We are presently in discussion with Nua Healthcare with regard to their proposed sponsorship of one of the awards and, as things currently stand, we are continuing with these discussions.

There have been objections to the NAS’ consideration of Nua as an award sponsor, because of concerns about one of the people Nua supports in a service in Ireland.

We appreciate that people have very genuine concerns, but we understand that this case is highly sensitive and complex and subject to ongoing discussions between the Health Service Executive (HSE) as commissioner in Ireland, Nua Healthcare as provider, and the family. We have further been informed that a professional independent advocate is working with all parties to ensure the individual needs and rights of the person supported are being facilitated.

In our discussions with Nua, we are seeking reassurance that they and the HSE will, as appropriate, give a clear public account of the situation, including how they are involving the individual concerned and his family in decisions about his support.

The NAS exists solely to ensure that people with autism and their families can live the life they choose. Achieving this is not always easy, and understanding people’s needs and aspirations requires the engagement and input of all of those working closely with them. The NAS cannot have this level of detailed knowledge and understanding of this case. However, we will be keeping developments under review as we consider Nua’s potential role as a sponsor.

Because of the sensitivity and confidentiality of the ongoing situation, which is the responsibility of the parties concerned in Ireland, it would not be appropriate for the NAS to comment further.

End of NAS response and statement

This evening I’ve been told by a friend of the Kletzlander family that NAS has decided to terminate discussions with Nua Healthcare about sponsoring one of the NAS Professional Awards 2015, which is very good news.  

However, I was made aware this morning by a friend of the Kletzlander family that Nua Healthcare has received ‘autism accreditation’ from the NAS.  Autism accreditation is a positive affirmation given by NAS of the quality of service provided by the paying applicant organisation.  It is very difficult to reconcile how such an endorsement can be given to an organisation that is still continuing to ignore the views and opinions of Anthony and his family.  Anthony uses a Lightwriter to communicate and this exchange, which I’m told recently passed between Anthony and the independent advocate on 23 June 2014 (Anthony has asked that this is made public), shows Anthony’s frustration that his views and wishes continue to be ignored by Nua:

Anthony: I want R (advocate) to see me typing so she sees I'm intelligent.

R: I know you are intelligent....

Anthony: I am frustrated that staff are not trained up in my communication.

R: Do you like Nua?

Anthony: No I hate it. I want independent living

R: Do you want C who comes on Wednesday to see you using the lightwriter?

Anthony: She is not trained up she needs training in my communication or it is a waste of time

R: What do you want me to do?

Anthony: Can you get me out of Nua please

R: Where do you want to live?

Anthony: In my own home near my family I don't see them often enough

R: Do you want me to visit you in Nua?

Anthony: Yes I think I need you to get me out of Nua, can you tell Geraldine Murphy (HSE Disability Manager) she won’t listen to us

R: Do you like B (NUA Team Leader)?

Anthony: No he is not honest

R: What staff do you like in Nua?

Anthony: I don't like any of them they don't care about me. I prefer to find my own staff with similar interests as me. I hate being treated like a child.

End of exchange between Anthony and the advocate. 

I am hoping Anthony’s supporters will keep up the pressure re autism accreditation.  Stay tuned for further updates :) 

Letters to NAS: young people in ATUs/residentials far from home

Here is the second of three letters going to the Chief Exec of NAS.  This one is about the young people with autism whose families are fighting to get them out of inappropriate placements.

Dear Mark

 

I write to share my concern about the incarceration by statutory bodies of children, young people and adults with autism in inappropriate settings and to seek action by the NAS to challenge this practice.

Children are often being put in residential placements, hospitals or Assessment and Treatment Units that are hundreds of miles away from their families and are also too often run by organisations who apply policies and practices that fail to take account of the young person’s autism, thus making inappropriate, sometimes damaging, provision for the young person placed in their care.

You will be familiar with the current cases of Josh Wills, Stephen Martinez, Thomas Rawnsley, Claire Dyer, Jack Beres, Nicole Longhorn, Dave Ashby and Chris McCarrick – all young people who have been placed at great distances from their families and/or in placements that do not appropriately understand and support their condition of autism.

 

I am aware that the NAS campaigns to improve services for children and young people as well as adults.  However, I believe that in cases such as those cited above - when some of these young people have suffered abuse as a result of their placements; when their human rights are being neglected or abused; when they have been detained under the Mental Health Act when in fact they are not mentally ill, but autistic  - there is an imperative for the UK's largest autism charity to use whatever means possible to proactively support each of these families in their efforts to secure the release of their children and find alternative person and family-friendly supported living solutions.

The NAS has caseworkers.  It has access to a legal network as well as access to politicians and other key influencers.  It helped bring about the Autism Act.  It is surely now time for the NAS to put the Autism Act to the test. The NAS is the organisation best placed to support families to bring legal challenges against health or social care bodies for being in breach of their statutory duty to provide appropriate services for children and adults with autism.

 

What is NAS doing to directly support each of the above families in their struggles to secure appropriate placements for their children?

End of letter.  Any response will be published as soon as I receive it and if you want to write to NAS to raise your own concerns about this please do so.  The Chief Exec’s email address is mark.lever@nas.org.uk

Raising concerns with NAS: sponsorship of NAS conference

This is the first of three letters I'm sending to the NAS to raise concerns about key issues that I believe they should be addressing as a matter of urgency.  The first letter relates to the sponsorship by Nua Health Care of the NAS Professional conference in March 2015 in the light of allegations made about the mistreatment of Anthony Kletzlander, a young man with autism who is in an institution run by Nua Health Care.  You can read more about the allegations and the NAS's response to them here.

 

I will be sharing any responses I get from NAS to all the issues I am raising with them.  Here is my first letter:

 

Dear Mark

I write to raise my concerns about sponsorship of the 2015 NAS Professional Conference.

These relate to Anthony Kletzlander, the young Irish man with autism who, it is reported, was placed against his will and against the wishes of his family in an institution run by Nua Health Care.

It is also reported that Nua Health Care administered anti-depressant medication and took him off his gluten-free diet: both actions being against his wishes and the wishes of his family.  Furthermore, Nua Health Care has refused to acknowledge Anthony's subsequent hospitalisation, which Anthony's family believe to be a direct result of Nua's actions.

Nua Health Care is one of the organisations sponsoring the NAS's conference in March 2015.  I understand that when concerns were raised about Nua Health Care's sponsorship of the NAS conference your response was to claim that the NAS had undertaken 'due diligence' in relation to Nua Health Care before accepting sponsorship.

I also understand that NAS has not contacted Anthony's family to investigate the above allegations further even though, if they are true, they amount to a serious abuse of Anthony's human rights as well as a breach of Nua Health Care's duty of care to Anthony.

Due diligence generally refers to the care a reasonable person should take before entering into an agreement or a transaction with another party.  In relation to the care that NAS should take, I contend that that the NAS should avoid receiving sponsorship from any organisation that operates poor practice and/or behaves unethically in relation to the care and treatment of people with autism.

 

In view of the reported failings in the care provided by Nua Health Care for Anthony and the possible breach of his human rights, I request that the NAS engage the services of an independent third party to investigate the Kletzlander family's allegations.

I further request that if these allegations prove to true the NAS withdraw from its arrangement with Nua Health Care.

I look forward to your response.

 

End of letter.  If you want to write your own letter about sponsorship of the NAS conference, please do, as Anthony's supporters are keen for as many emails/letters of protest to be sent to NAS as possible in order to convince them to drop their association with Nua Health Care.  The Chief Exec's email address is mark.lever@nas.org.uk.

 

Two more letters to NAS to come later on different issues and later on this week there'll be an update on progress to date with my attempts to access Children's Continuing Care funding.

The NHS Continuing Care rollercoaster: Door 1 - referral

Ok so I have been doing bits and bobs of work to try to understand the process more clearly and to start it off.  Here is what I have found out so far:

 

The phrase ‘NHS Continuing Healthcare’ applies to what is available to adults (over 18)

The correct term for the parallel process that applies to children is ‘NHS Continuing Care’

I’ve been told this by the Complex Case Manager (Children), Associate Designated Nurse Safeguarding Children from NHS Oldham’s Clinical Commissioning Group.  Henceforth this bod is going to be referred to as the CCMC.

 

It’s important to note at this point that according to the NHS Choices web site, the main difference between children’s and adults continuing care ‘is that while continuing healthcare for adults focuses mainly on health and care needs, continuing care for a child or young person should also consider their physical, emotional and intellectual development as they move towards adulthood.’

I’m getting quite friendly with the CCMC – she’s ringing me tomorrow about the first referral I’ve made for a young person with autism and severe anxiety.  We’ll call this young teen Tess.  Tess has a diagnosis of autism and two older siblings on the spectrum.  All 3 young people are living at home with Mum who is a single parent and a full time carer.

When I asked the CCMC about the referral process, she told me ‘As each child is individual in their needs and current support the process would be specific to the individual family. Please give me a call on the number below to discuss the child. I can then advise on the best way to progress.’

I have an anxiety that this phone chat is going to be used to try to gate-keep me from even getting through the first door i.e. for me to successfully make the referral.  Dixon says I should stop being such a conspiracy theorist but after experiencing (in my role as Head of Development at Bright Futures School) several cases of stone-walling and off-fobbing from education and social care services for different students, I am ever the sceptic. 

In terms of the referral, the CCMC tells me ‘Any of the multidisciplinary team involved in the care of a child can make a referral for Continuing Care. It would usually then be one of the health professionals involved in the care of the child who would complete the initial assessment.’

For Tess, there is unfortunately currently no health professional involved in her case.  She was referred to CAMHS and the practitioner there did a 6 session piece of work with her Mum to support Mum to help Tess use anxiety-management strategies.  At this point, Tess was suffering from increasingly frequent panic attacks, was hearing voices and seeing threatening figures and was struggling to stop herself perseverating on negative thoughts.  She was also having great difficulty tolerating being around unfamiliar adults and children/young people and experiencing what is being investigated to determine whether it is epileptic seizures or PNES (Psychogenic Non-Epileptic Seizures – attacks that look like epileptic seizures but are a manifestation of psychological distress).  Mum was very worried and feeling utterly helpless.  A Consultant Paediatrician recently saw Tess and remarked to her Mum that Tess’ current difficulties were a clear case of previous difficulties being untreated/unmanaged by services to the point that they have now escalated into crisis.  Of course at this point, the difficulties are much more severe and much more costly to address.

Another referral to CAMHS has been made and has been accepted but at this point the practitioner (a new one because the previous one’s post was not renewed) has not met Tess and so cannot be said to be actively involved in the case.  So there isn’t really a health professional available who could undertake the initial assessment.  On the other hand, staff at our school are very familiar with Tess’ case and are more than capable of filling in referral forms and undertaking assessments (we have CAFs, Child in Need meetings and RASs, Child Protection meetings, annual review meetings and forms etc etc coming out of our ears), so it will be interesting to see if I, as referrer, might qualify as a professional who can complete the Continuing Care initial assessment.

The assessment process seems to be similar in format to that of social care in that it involves an initial assessment followed by a more in-depth full assessment.

The DH guidelines state that initial assessment should be carried out by ‘a healthcare professional who is experienced in working with children and young people. This person may be described as the "nominated children and young people’s health assessor”.’

Experience in working with children and young people is one thing…experience of working with children and young people with autism (both with and without learning difficulties) is quite another ball game.  To really understand the impact of autism any professional would need a robust understanding of child development and how interpersonal relationships in the early years of child development are key to shaping our ability to regulate our emotions, to the development of resilience, to our ability take different perspectives in order to inform our thinking, to respond flexibly and adaptively in the moment in a world of ever-changing, competing demands, to be able to effectively process information from a number of different sensory channels simultaneously.

Ok so I’m already finding this a tad scary. If an assessment is to be undertaken on any CYP with autism, we need to have confidence that the assessor will understand the impact of their condition.  At the moment I don’t feel I can give this a tick.  If the assessor doesn’t have this type of experience and understanding, how does that comply with the Equality Act and the Autism Act??……but I’m running away with myself here..…focus, woman! and wait to see what the CCMC says.

In Continuing Healthcare (adults) there is an initial assessment checklist which is used to evaluate whether the adult should proceed to a full assessment.  If a full assessment is warranted, the ‘Decision Support Tool’ (DST) is then used to undertake the full assessment.  At the moment, no-one in the Integrated Health and Social Team from Oldham’s CCG is able to answer my question about whether there is an initial assessment checklist for children’s Continuing Care.  I was asked to wait to speak to the CCMC about the initial assessment.  It would be pretty scary to find that there is no standard assessment tool for this initial stage……what would that mean for transparency and accountability of process?  It’s alarming to note that if there is an initial assessment checklist (or any formal initial assessment process for that matter), no-one in the whole of the Integrated Team appears to know about it.

Jumping ahead, I have a copy of the DST that is used for full assessment for children in Oldham.  The domains assessed are: Challenging Behaviour; Communication; Mobility; Nutrition, Food & Drink; Continence & Elimination; Skin & Tissue Viability; Breathing; Drug Therapies & Medicines (symptom management); Psychological & Emotional; Seizures.  It is very much like the national DST for children, which can be found here at Annexe A.

Care domains can have up to five levels of need based on a mixture of complexity, intensity, unpredictability of need and risk to the child as reflected at the following levels: Priority; Severe; High; Medium; Low.

Three high, one severe or one priority rating indicates a need for continuing care.  

 

In terms of Tess’ needs, I would argue that she has severe needs in 3 domains and high needs in two domains.  The ‘severe’ may even be ‘priority’ but this is difficult to assess without any other assessments to compare it to.  I do however feel confident in providing evidence for the 3 ‘severe’ ratings I have identified and on that basis alone (she actually only needs one 'severe') she should qualify for Continuing Care.

But will Tess’ case even get through the door? 

All aboard who's goin' aboard! The Continuing Healthcare rollercoaster. Pt 1

Us autism parents probably know quite a lot about education funding (via statements of SEN) and social care funding (via Child in Need assessments) but I reckon that unless our kids also have a physical disability, most of us probably don’t know much about Continuing Healthcare funding.  So I decided to look into it more and to share what I find.  This will be experiential learning as I’m intending that it will include analysis of 2 live applications for CHC funding.

I’ll be doing this in stages….blogging about each part of the process.  In this first blogpost, I’ll be looking at how CHC might be relevant to us.

What is CHC?

It says on the NHS Choices web site that CHC funding for adults (over 18) is ‘the name given to a package of care that is arranged and funded solely by the NHS for individuals who are not in hospital but have complex ongoing healthcare needs.’  The national framework for CHC for adults can be found here.

CHC for children is defined as ‘support provided for children and young people under 18 who need a tailored package of care because of their disability, an accident or illness.’  The national framework for CHC for children and young people can be found here.

For us families of children and young people with autism, the other thing to remember about CHC is that when it comes to Education Health and Care Plans (which replace statements of SEN this September), the CHC criteria will be the criteria that determine whether or not health funding is put into the EHC budget.  So in Oldham where I live (it will differ according to area but should be similar), we will have the Education RAS (link not currently available) determining eligibility for education funding, the social care RAS determining eligibility for social care funding and the CHC criteria determining eligibility for health funding (more detail on this in an upcoming blogpost).

How might CHC be relevant in autism?  Setting the scene:

Hmmmm, ‘children who need a tailored package of care because of their disability, an accident or illness’.  Now there’s a big umbrella.  From what I can gather, CHC funding seems to be awarded mainly to folks with physical conditions and/or learning disabilities.  It seems to be rare for CHC to be funded where a person’s autism has a significant impact on their quality of life.

I’m constantly reading on facebook heart-breaking stories of young people with autism who have above average IQs and don’t have learning difficulties but who are self-harming, suicidal, having such severe difficulties with emotional regulation that their families feel their only option is to seek residential placements for their young people.  Some of these young people have Asperger’s Syndrome and some been given the label ‘Pathological Demand Avoidance Syndrome’ (PDA).  I struggle with the language of PDA, not least because I don’t think there is anything ‘pathological’ about the demand-avoidance that we get from CYP with this type of autism profile.  To me it’s completely understandable and is exactly how I (or indeed any other human being) would behave if we too had the same kind of severe difficulty managing uncertainty and change. 

I’m not going to use those labels.  Instead, I’ll describe the types of difficulty that I’ve seen this set of CYP tending to experience. 

So we have here a group of CYP whose difficulties managing uncertainty and change are so severe that their need to be in control is all-consuming, who are unable to tolerate failure by applying ‘good enough’ thinking, who have low resilience and have great difficulty bouncing back from setbacks, who are unable to see the ‘big picture’ and so get stuck on the detail, who have great difficulty taking on board and using anyone else’s perspective to inform their decision-making and who are for the most part unable to manage their own emotions.  They can go from calm to angry/frustrated in a very short space of time and because they are usually bright and articulate, it can be incredibly challenging to ‘de-escalate’ difficult situations, which can either spiral into negativity and self-loathing or degenerate into a screaming match that often ends in meltdown (sometimes of all parties involved).  Very skilled support and understanding is needed to help CYP with this type of autism profile through these situations.  Most families are not given the training that helps them to understand what is going on for their CYP and/or to change their (parents’) own communication style and expectations in order to prevent these situations happening in the first place and manage them more productively when they do.

What CYP with this type of autism profile also have – crucially - is insight into their own condition.  They know they are different, they know that their differences frequently cause them great difficulties and they know that this might mean that they will miss out on many of the opportunities open to their typically developing peers.  And here I don’t just mean going to the cinema.  I mean fulfilling jobs, independent living and meaningful reciprocal relationships.  The last one is the one that kills me and if you want to know more about how devastating this is, read what adults with Asperger’s Syndrome themselves are saying and feeling about loneliness. Be sure to scroll through the comments - they are heart-breaking.

For CYP with the type of autism profile that I've described above, social communication breakdowns happen with such frequency that they are in an almost constant state of emotional dysregulation.  I don’t know of any research that has been done into the impact of this kind of stress in CYP (if you do, please let me know), but I do know of research that shows that mothers of CYP with this kind of autism profile experience stress similar to combat soldiers.  Yes, you read that correctly…..combat soldiers.

We also know that this kind of unrelenting stress has a huge impact not only on emotional wellbeing but also on physical health.  And that CYP with this kind of autism profile are also more prone to mental illness.

To me, the impact of this type of autism profile is such that it warrants a ‘tailored package of care’ and should mean that CYP with this type of autism profile are eligible for CHC funding.

In my next blogpost, I’ll be looking at the CHC criteria in detail.  In subsequent blogposts I’ll be sharing with you the progress of the 2 live CHC applications that are being made on behalf of two young people with autism – one with the type of autism profile I’ve been describing above and one with autism and severe anxiety disorder.  There may also be another case study of a disabled young person without autism but with cerebral palsy.  I’ll be looking at whether the criteria allow for the impact of each condition to be adequately represented and assessed and thinking about how to challenge the criteria, if appropriate.

I’ll share any responses that are received about eligibility or otherwise and any steps that are taken to further assess each case or to appeal against a rejection.  I’m not optimistic about either of the autism cases being awarded CHC funding and am anticipating appeals and possibly judicial review…..but I think the system needs testing and you know me, I just can’t live with stuff that seems manifestly unfair.

Fasten your seatbelts folks…..we could be in for a long, bumpy ride!

 

P.S. I’m not suggesting that people with other autism profiles and other disabilities aren’t or shouldn’t be eligible for CHC funding – I’m just dealing in the type of autism profile and disability that I know most about here J