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?

Lincolnshire Drop-Ins

Drop-in clinics for Parent/Carers who have Children with Disabilities, Autism Spectrum or Sensory Needs.

From the beginning of May the Early Support Care Co-ordination service (ESCO), have introduced ‘drop-in’ clinics at 21 children’s centres around the county. The clinics enable parents or carers to have 1:1 consultations with an Early Support key worker from the children with disabilities service and are bookable direct through the customer service centre (CSC) on 01522 782111. The drop-in clinics form part of a new service offer for ESCO which recently extended provision from under 5’s to children in the 0-13 age range. From June this has been extended to all children and young people up to 18 years of age who have disabilities (to include autism), sensory loss and/or complex medical needs. Working closely with the CSC, the idea was developed in response to parents wanting face to face consultations, help with problem solving and bespoke signposting to universal and targeted services to include Lincolnshire’s short breaks programme.

ESCO Image

 

Parents can choose a clinic nearest to the family home or place of work and at a time to suit them.

For more information about ESCO’s new service offer contact Jon Hird ESCO practice supervisor on 01522 552389 or 07795968494, or email esco@lincolnshire.gov.uk 

 

 


Personalised Budgets Programme.

Lincolnshire County Council has been working with parents and young people to develop their personal budgets programme.

A number of consultation groups were established which have taken place on a number of occasions across the county at various geographical locations and taking into account working parents. The parents who attend these meetings are reimbursed both travel and parking costs.

Michelle White who has responsibility with the authority for the Sensory Education and Support Service and Early Support Care Coordination, says that

Parents have been positive and hardworking groups, although only small numbers of parents have been able to attend, however, a regular newsletter is circulated to 55 parents who have responded and expressed interest in the work of the group, many of who contribute electronically to the discussion.

Consultation events with young people have also taken place and their views have informed the development of the programme

This is a parent lead programme with the work of parents via the consultation groups feeding directly into the steering group and informing the discussions and decision making of the steering group, which comprises representatives from various agencies and parent/carers.

The work of the consultation groups and the steering group has included;

  • Revising the Resource Allocation System (RAS) to ensure that it reflects the needs of the disabled child and their family
  • A desktop exercise has been undertaken by social work staff, which was designed to compare the outcome of the RAS with the current packages that the families receive. The exercise involved the information of over 50 families being assessed against the new Resource Allocation System (RAS), which parent/carers have been influential in revising.  The outcomes are currently being evaluated, and to date it would seem that the RAS is fair for Lincolnshire families and will give a consistency for families.
  • Families reported difficulty in being able to access the service in the first instance via the Customer Service Centre (CSC) due to high volume of work at the CSC.  This prompted a data collection exercise over 4 months which is currently being evaluated.
  • The consultation and steering groups respectively identified that the market place needs to be explored.  A sub group has therefore been established to develop this.
  • Earlier this year the authority offered families who did not receive any social care services the opportunity to apply for a one-off individual grant to give some indication of the sorts of short break activities they would access given the opportunity.  Michelle White says that:

The evaluation of this programme has revealed how positive this approach has been and what a huge difference it has made to families, both in terms of the break for the carers, the positive impact on other children in the family and the enjoyment gained by the disabled child/young person.

The evaluation of this programme, along with information from the consultation groups about how the degree of assessment required for relatively small amounts of Direct Payment to secure a personal assistant could feel intrusive has lead to the steering group supporting a ‘Flexible Short Break Grant’ of up to £2000, which families can apply for.  A task group has been established to design the questions and processes to develop a lower level assessment process for this.