Putting The App On Trial

Those who have been spreading the word about the Early Support app have been telling anyone who will listen about the way that it puts the Early Support approach and principles into practice in one handy tool; this is social networking with knobs on, and with a hefty padlock provided.

It is designed to be a way for families to save all the important information about their child, in one place, and to enable them to share the information that they want with professionals and family.

However, frustratingly, the release of the final version has been put back a couple of times. Zoe Davies has been testing out the beta version. Here she tells us whether it’s going to be worth the wait.

The Early Support App is very easy to use and with the frequent developments information is becoming easier and easier to input. The App allows a parent carer or young person to ‘own’ it and so they are very much in control of the information held and can present it in a way suitable to their needs. It also allows the family to ‘invite’ professionals and family members to access information they would like to be shared. Messages can be sent to these people, saving time on telephone calls, where frequently the person is unavailable and messages have to be left.

Early Support App Image

The Early Support App allows the focus to be about the ‘whole’ young person rather than just their difficulties, which is often the emphasis of meetings.

The information allows the focus to be about the ‘whole’ young person rather than just their difficulties, which is often the emphasis of meetings. Photos and video clips can also be added, which makes the App very personal and allows a professional to have more insight into a young person than just being told does would.

The App has a calendar on it which is brilliant for appointment tracking and a timeline, which is very useful for recording key events. This again is great for focussing attention on achievements rather than just difficulties, which traditional paper records do not include.

The story about the young person does not have to be repeated every time there is an appointment or meeting and information is available without having to carry folders of reports everywhere. It also, very importantly, means that vital information can be shared between services so that nothing is missed. All too often reports sent via post do not make it to the right person in time for a meeting, meaning valuable appointment time is wasted revisiting information that should have been available.

I will definitely be recommending the App. It will make life so much easier; allowing information to be shared instantly and to be on hand whenever it is needed. It will save time preventing retelling the same story and allow meetings to be far more efficient as old ground will not have to covered again. It also brings attention away from difficulties and back to celebrating what the young person is actually capable of.

The Early Support App runs on Apple iPads and is also available through a web browser on a computer or mobile device. Training sessions will be on offer as soon as the App is released. Get in touch with us here at In Principle if you’d like to know more about that.



Why Early Support Is So Important To Me

So, why is Early Support so important?

Isaac and Joshua

Isaac and Joshua

I have 2 boys, aged 3 and 5 both with a diagnosis of ASD.  The eldest also has sensory processing disorder; the youngest has allergies, eczema, eating and sleeping difficulties and laryngomalacia (a floppy larynx in simple terms), and both are under the ophthalmic clinic.  I spend a lot of time in meetings for the boys, with school, pre-school and medical appointments and so have started to see how Early Support (ES) could really help.

Some excellent things we have seen recently from various professionals include school taking a keen interest in ES, and discussions imminent about how to get really involved and use an ES approach, and pre-school taking difficulties very seriously and working with us to ensure all needs are met by them.  We also have a fabulous paediatrician who has even responded to an email by telephoning us, an amazing occupational therapist prepared to visit school and offer them training and an orthoptist who made consecutive eye appointments for the boys.  Many of the professionals understand autism and the challenging behaviour that may be seen at appointments, which means we don’t have to explain ourselves.

We really cannot thank these people enough.  These are some of the Early Support principles in action, and help us so much, especially when we are exhausted and overwhelmed.  A little support goes a long way.

Today however I saw for the first time what happens when it doesn’t come together. I went to an appointment for the youngest about his larynx which causes noisy breathing, and possibly could contribute to his poor eating and sleeping.  I was expecting to be told there was no cause for concern.

The appointment was running 90 minutes late – very challenging with a lively, autistic 3 year old.  When we finally got into the clinic I was staggered that none of his notes from any other clinics were with his records, and so they were completely unaware of any of his other needs including ASD.

The result of the consultation was that he needs to be put to sleep to have his airway examined and then possibly have an operation.  However there are no guarantees things will improve, and of course operations come with a risk.  I wasn’t given any options and we have been put on a waiting list.

I left feeling slightly bewildered; unsure of where to turn, who to ask and what to do next and then it dawned on me.  How can a decision like that be made with no other input from medical experts who know him like a paediatrician, a dietician, an allergy consultant, a dermatology nurse?  And how can we, as parents with no medical knowledge other than our own research, make an informed decision about whether he should be operated on?  We can’t.

Early Support suddenly makes complete sense.  Working in partnership is vital; consultants are only experts in their own field, so surely the opinions of the others who treat him are essential?   We don’t know if his eating and sleeping difficulties are a result of autism or his floppy larynx, or neither of these.  Giving us more information so we can make an informed choice is vital.

I get it now.  I cannot wait until Early Support becomes second nature to all.

Early Support & The Capacity Of The System

This article was written in response to an introductory presentation to Early Support given by Fiona Holmes.  After the presentation, my concern was that however well designed the Early Support Programme might be, its effectiveness could be impaired by the framework in which it operates, at a national and local level.  I was particularly concerned about what I see as a failure of national and local government to ensure that the education, health and social care sectors have sufficient capacity to meet the needs of children with special educational needs and disabilities (SEND).

Sue Gerrard

Sue Gerrard

Me and my family

First, a bit about my background.  I trained initially as a psychologist then as a primary teacher with a view to becoming an educational psychologist.  But I didn’t enjoy teaching, so did other things, got interested in management and ended up taking a Master’s degree in occupational (work) psychology.  Our daughter was born in the middle of my course, and because both our children have health issues, I’ve managed never to actually work as a psychologist.  But that background was very useful when our son turned out to have developmental problems.

He has a diagnosis of an autism spectrum disorder.  We first suspected a developmental problem when he was about 18 months old, and our journey through the system has been fairly typical of that for a family with a child whose needs are complex but not profound.  My son was ‘diagnosed’ at 10, has spent four years out of school, and now attends an independent specialist school where he’s doing OK…ish.  Although he now has a ‘diagnosis’, his sensory and physical problems have essentially been overlooked – or would have been if I hadn’t been persistent and paediatricians hadn’t been sympathetic even if they were too busy to be proactive.

What’s wrong with the system?

What puzzled me when this journey first started was why support for children with SEND seemed so poor compared to what was available when I was teaching in the late 70s/early 80s.   At that time, wherever you poked it the UK was in some sort of crisis, but despite that, unless my memory fails me, children with visual deficits seemed to get the right kind of spectacles, those with speech and language difficulties could get weekly therapy, and referrals to OTs, physios and educational psychologists were run-of-the-mill.  I couldn’t figure out why, given our economic prosperity and increased knowledge 25 years later, support services for children appeared to have fallen into a black hole.

So I’ve probably spent as much time during the last decade trying to figure out what’s wrong with the system as I’ve spent trying to figure out what’s wrong with my boy’s development.  I’ve come to the conclusion that the root of the problem with the system is that policy-makers (including the people who design training for front-line professionals) tend to impose their conceptual models onto the real world, without getting sufficient feedback from the real world as to whether or not their conceptual models are accurate.  Fiona touched on this in her presentation when she referred to the medical, social and representational models of disability – more of which later.   Because there often isn’t a feedback loop in policy-makers’ conceptual models, data-gathering and analysis aren’t an integral part of public sector services’ design and delivery, not in terms of the workability of conceptual models at least.

For example, a few years back I attended the inaugural national conference of the Autism Education Trust.  Another parent and I went to a workshop given by representatives from a local authority that shall remain nameless, about using data in service design.  The LA officers showed how they used data about children with autism to inform the way local services were structured. It was an informative and useful workshop.  What puzzled us about it was the way the LA in question was presenting its use of data as an important discovery – a breakthrough in policy development.  The other parent and I wondered what information they’d used previously to design their services.

Another (also anonymous) local authority has taken more than five years to not manage to build a database of the needs of disabled children because, as far as I can ascertain, there are software compatibility problems with their computer system.  I realize there might be data protection factors involved, but I reckon, if the parents attending Fiona’s presentation were given this task, in three months they could have completed an up-to-date, workable database that would give a reliable indication of the needs of local children with disabilities even if it wasn’t exhaustive and even if it was stored on index cards in a shoe box.  I know they could do this, in fact, because some of them have already done it, although their database is slightly more sophisticated than the one I described.

A third example: One recent independent CAMHS review commissioned by a local authority found that a comprehensive needs analysis had never been carried out for children’s and adolescents’ mental health needs, which explained another of the review’s findings – that there was a mismatch between the services that CAMHS thought it was supposed to be delivering and what other services thought it was delivering.  As a consequence, children referred for minor behavioural problems were falling between service stools and ending up with major behavioural problems that made them eligible for a CAMHS referral.

The rarity of needs analyses explains why my son has had such difficulty accessing support from educational psychologists, occupational therapists and speech and language therapists, despite his range of acknowledged difficulties with sensory and motor function, learning, and receptive and expressive speech.  If service commissioners don’t actually have reliable information about the extent and nature of local needs, they can’t commission services that will meet those needs effectively – unless of course they happen to be very good at guesswork.

Medical, social and representative models of disability

Going back to the medical, social and representative models of disability, I’ve noticed that what often starts out as a valid, reliable conceptual model often becomes strangely transformed as it migrates into public policy.  The social model of disability, for example, makes a distinction between, on the one hand characteristics within individuals that make it difficult for them to lead the sort of life they would like to lead, and on the other, the obstacles they encounter because the community doesn’t make adjustments for those individual differences.  However, that’s not the model that appears to have made its way into public policy.  Rather than recognizing that social factors contribute to disability, public policy seems to see disability solely in terms of social factors – resulting in a tendency to overlook the possibility that children with no obvious medical condition might still be found to need spectacles, hearing aids, mobility support, occupational or speech and language therapy etc, if the time and trouble were taken to find out what was causing their developmental problems.

The reason the medical model is widely criticized is not because people with disabilities don’t have medical problems, but because the medical model frames their disabilities solely in terms of their medical problems.  The social model of disability seems to have ended up being equally deterministic.  I still haven’t found out what the representational model of disability is.

Early Support

What’s all this got to do with Early Support?  Early Support looks very helpful, and the few parents I’ve come across it who have used it had some very positive things to say.  My reservation about it is that if a local authority hasn’t carried out a comprehensive needs analysis, and/or doesn’t have the capacity to meet local needs, no amount of professionals talking to each other or parental empowerment is going to provide that capacity. I still need to be convinced that many local authorities have both the information and the expertise required to redesign services in a way that efficiently meets the needs of disabled children.

I suppose I feel sceptical because over the last decade I’ve seen so many initiatives come and go, none of which has made one iota of difference to my son.  At about the same time as we realized he was teetering on the brink of a public sector services abyss with us as his safety net, the then government introduced the Every Child Matters agenda.  Except that although every child might have mattered to government, each child actually didn’t.  If you happened to be a square peg when all that was available to you was an increased number of round holes, it was tough.  I can still recall my incredulity when it was decided that teachers should receive SEN training and SENCOs should be trained teachers.  Who in their right mind would even have considered designing an education system where teachers didn’t get SEN training and SENCOs weren’t trained teachers?

So… in circumstances where services don’t currently have the capacity to meet needs, what is likely to happen as a result of Early Support training?  Is Early Support seen as the thin end of a wedge, raising the awareness of parents and individual professionals, then of specific services and eventually local authorities – of a new way of working? And how is it going to tackle local authorities that don’t have the capacity to meet needs because they don’t know how to find out what those needs are?