Sunday 10 August 2014

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


  1. This is excellent. So useful. Thanks Zoe

  2. Thank you so much for doing this Zoe - you're providing a public service,