Using Personal Budgets to help children and young people with autism, a learning disability, or both

North Central London (NCL) Transforming Care Partnership (TCP) (Islington, Haringey, Camden, Barnet and Enfield) has a strong focus on children and young people (CYP).  This is reflected in a governance structure that includes a Children and Young People's Special Educational Needs and Disabilities (SEND) Transforming Care Group, made up of young health commissioners and when necessary colleagues from education and social care.

Islington are also an NHS England Demonstrator site for Personalised Care.  That focus on Choice and Control (local name for Integrated Personal Commissioning, or what is now Personalised Care) is helpful in finding person centred solutions to keep children and young people with a learning disability or autism from going into Tier 4 hospitals.

Joined up across education, health and social care

NCL have dedicated Senior Care Coordinators to coordinate Care Education and Treatment Reviews (CETRs) and their “Red, Amber, Green” Admission Avoidance Register (AAR)(Red meaning a CETR is needed, Amber - keeping a close eye on these children and young people, and Green where things have improved and stabilised over a period of time.  There are sub-groups within the Transforming Care cohort where work is being done on identification:

  1. An Education watch list (this is Islington only) (mainly those with a learning disability, but also school refusers and those out of school)
  2. Children and young people who are Looked After who have had at least one placement break down (and have autism or a learning disability) (Islington and Haringey only)
  3. Those supported by the Child and Adolescent Mental Health Services (CAMHS) Adolescent Outreach Teams (AOT) who provided increased level of input (Islington and Haringey only)

This approach ensures buy in across education, health and social care. It has also informed the development of the Transforming Care Protocol so that it no longer has just a clinical focus, with the addition of a one page profile making clear it covers those at risk of going to a Tier 4 hospital, exclusion from school, and living  situation or other breakdown due to unmet mental health and/or behavioural needs.

The monitoring meetings for the AAR and risk stratification take place in conjunction with education and social care leads.  This buy in allows the TCP area to act quickly to support children and young people when things are not working well. It is also allowing the TCP area to see patterns of those at risk and their needs.  They are also able to see why sometimes it is difficult for community services to diagnose for example atypical autism (that can become apparent in inpatient settings where there is close monitoring). 

Personal Health Budgets (PHBs) and Personal Budgets (PBs)

In Islington, those on the AAR have been supported by PHBs, PBs and short breaks as part of packages of support to keep them living in and supported in their local community.  Some recent examples include:

  • A teenager with autism, mental health needs and an eating disorder received intensive support over the summer 2018 to stop a Tier 4 hospital admission. A CETR agreed that the young person needed 1-1 support and a trusted tutor was commissioned to do this through a PB. Activities undertaken were linked to the YP’s personal interests. An intensive support service in a local eating disorder service was also commissioned. The immediacy of being able to agree the support and act to get this in place, as well as the joined up approach across education, health and social care meant that this was able to prevent the young person being admitted to a Tier 4 bed that week. This flexibility was needed to make this work for the young person and their family. The young person is now back in school while continuing to attend the eating disorder service.
  • A teenager with autism and a history of substance misuse has been engaged through a strong personal interest in philosophy though the use of a PB to purchase philosophy lessons.
  • A teenager was placed in a residential placement due to difficulties in the family home; they hadn’t accessed education for 6 months, and struggle to develop relationships with their peers due to possible Post Traumatic Stress Disorder (PTSD), therefore socially isolated. They also have a learning disability. They used a PB for drama lessons, to develop their confidence and well being, and help provide them with opportunities to make friends.
  • A teenager with a learning disability, autism, a lot of energy (a particular challenge identified in the CETR related to damage in the home due to the young person’s behaviours) and love of music needs a way to support that and a trampoline and an ipod are being purchased through a PB.

For more information contact: Katy Briggs, Commissioning Manager – SEND, Islington Clinical Commissioning Group, London

Mobile: 07712 236609 Email: