New Resources: A Pathway for Children

by family carer Jacky, and Jacqui Shurlock on January 4^th 2017

The Challenging Behaviour Foundation has been working with the National Development Team for inclusion (NDTi) to develop three new resources setting out a vision of future local pathways for children with learning disabilities and/or autism whose behaviours may challenge.

Family Carer Jacky shows why a new Children’s Pathway is needed:

My son Tomas became eighteen in September, and we have been grappling with various “transition” processes for a couple of years. The first one to kick in was for education.  We needed to identify a post-16 education placement suitable for our son’s complex mixture of autism, profound learning disability and sensory processing difficulties, all of which led to him struggling with change and responding in ways which challenge us and service providers.

We were aware of the difficulties associated with transition and so were pushing for early discussions – but we found a process that really didn’t want to move faster than they “usually” went, and a process that wanted us to go from service to service and be told “no” before moving on to the next option. We were very excited to finally see a new post-16 unit at a special school particularly focusing on young people whose behaviour challenges, only to be told – “oh no – not that challenging – we don’t have a separate low arousal space”. It was hugely frustrating that at no point was there an opportunity to speak to local authority managers with any ability to vary the “process”. No effort was made to actually look at my son’s needs and consider which of the different settings might be able to meet them.

We have commonly seen other young people we know placed in settings just because the providers are willing to say “yes we can meet their needs” even though the placement or subjects being offered aren’t what the young person or parents actually want. Sadly it’s because there are no other options. These inappropriate placements usually end in numerous exclusions and rounds of meetings but no joint working with education, social care or health to look at what other options could better meet their needs and reduce the risk of escalating challenges that ultimately result in crisis placements miles from home.

Having a clear strategy and framework to plan for and meet the needs of our children and young people, as well as develop the options for them at this transition point is essential to give them the best start as adults.

Jacqui Shurlock, the CBF’s Children and Young People Lead, introduces the new resources:

This website is dedicated to sharing what we know about best practice in supporting children with learning disabilities whose behaviours are described as challenging.  Most people are not aware that many children and young people in this country today are still treated in ways which we thought were consigned to the past
with Victorian asylums.  Yet in 2015 there were 165 children and 725 young people (aged 18-25) with learning disabilities living in Assessment and Treatment Units (ATU).  Despite the innocuous name of these units, nearly two thirds of children had been given anti-psychotic medication on a regular basis and were likely to have suffered self-harm, hands-on restraint, and seclusion.  The average annual cost for a child in an ATU is a quarter of a million pounds.

Many more children with learning disabilities or autism live out of area in 52 week schools (1100 children were identified in a recent survey, based on responses from 148 local authorities [1]) with  75% placed more than 20 miles from home. The most recent estimates put the average annual cost of an out of authority placement at £99,798 for a boarding place, rising to £171,176 for a 52 week residential placement.  Research shows that challenging behaviour is a key factor that leads to exclusion from mainstream schools, breakdown of placements and family breakdown. Around a quarter of children and young people in custody also have learning disabilities.

Good local pathways of support for children with learning disabilities and autism are key to averting the “well-trodden” path of a lifetime of restrictions, currently experienced by too many children and young people.  The pathway resources we are launching today (developed by the CBF and NDTi) show that as well as averting crisis situations, local authorities and CCGs must work together to  identify difficulties early in childhood and use evidence-based approaches to address those difficulties.  The use of Positive Behaviour Support in local areas  has the potential to deliver significant social and economic benefits as well as improving the wellbeing of children and their families.  This is particularly true where problems are likely to escalate over time.  We hope these resources (free to download) will help Transforming Care partnerships, local authorities and CCGs to work together with local families to develop a new approach.

The resources being launched today are

1. Why we need to develop local pathways
2. Legal duties and guidance
3. Tools to develop local pathways

If your local area needs help to develop local pathways for children or to engage effectively with families of children with learning disabilities whose behaviours challenge please see here for support offered by the CBF.

[1] NHSE (2016) Survey of Local Authority Areas regarding Children and Young People with Learning Disabilities and / or Autism Placed in 52 Week Residential Schools – summary report