Last updated: 16 August 2023
Next review: 16 August 2024
Transforming Care: People with learning disabilities and autism
Transforming Care is a programme that aims to improve the lives of children, young people and adults with learning disabilities and or autism who display behaviours that challenge them. This includes people with mental health conditions.
If your child has challenging behaviours as a result of learning difficulties and/or autism and may have mental health needs, then they would be considered part of the group of children and young people that the Transforming Care programme will support.
The programme has three key aims:
- To improve the quality of care for people with a learning disability and or autism
- To improve the quality of life for people with a learning disability and or autism
- To enhance community capacity, thereby reducing inappropriate hospital admissions and length of stay
More information on Transforming Care can be found on the NHS England website.
A guide for families has also been written by an organisation called 'Bringing us Together'
As part of the Transforming Care Programme, Integrated Commissioning Board’s are supposed to keep a list of people who may be at risk of hospital admission or placement breakdown. The difficulties will be a result of challenging behaviour associated with Learning Disabilities and or Autism.
This ‘list’ is called the Dynamic Support Register.
Dynamic Support Register
The Dynamic Support Register is a list of children and young people with Autism and Learning Disabilities where there is a risk of a placement breakdown such as at home or at school. They might be at risk of being admitted to a specialist learning disability or mental health hospital.
This list is for children and young people with a learning disability, autism or both. They might have behaviour that challenges or mental health conditions.
Risk factors for the young person might include:
- They are displaying challenging behaviours that schools or homes are raising as being of significant concern
- They are already in a residential 52 or 38-week school or social care placement which is having difficulty meeting their needs
- They have previously had a CAMHS T4 admission hospital and there remain concerns about their mental health
- They are known to the criminal justice system. Youth Offending Service and there are concerns about mental health and or challenging behaviour
- They are in a placement Joint Funded across health and social care which is considered to be unstable
Many of the children and young people who are on the Dynamic Support Register will be known to existing services such as SEND, Disabled Children’s services, or Children Looked After.
If a child or young person is placed on the Dynamic Support Register this means that the Integrated Commissioning Board can ensure that they are receiving support to enable them to stay in the community
Referring to the Dynamic Support Register
A child or young person can only be included on the register if they (or their parent, guardian or carer) have given their consent. There are two forms that need to be completed and signed:
There is also a Dynamic Support Register easy-read consent form
Parents can refer their children, or the referrals can be made by your social worker, SEN Officer, school or health professional. Following completion of a Dynamic Support Register parental referral form, the team will seek information from professionals who know your child, with your permission.
Referrals and queries can be sent to the Dynamic Support Register Lead Stephanie.Earle@Walthamforest.gov.uk
NHS England has also published guidance on consent
What happens after your child is accepted onto the Dynamic Support Register (DSR)
The referral will be considered to see if your child meets the criteria for the DSR. If the referral is not accepted, you will be contacted by the commissioner and put in contact with services that might better meet your needs e.g. a referral to Early Help or other services such as therapies or Educational Psychology
If the referral is accepted, the referral will be considered at a multi-agency meeting of people who work with your child. The meeting will discuss what services or support help to improve the situation
The group might consider solutions such as:
- Referral to additional services such as therapies or Child and Adolescent Mental Health Services
- Referral to the Key worker service
- Additional support at home or during leisure such as short breaks or a mentor
- Intensive support at home through services such as Positive Behaviour Support, Non-Violent Resistance Therapy, or other interventions such as trauma based approaches from psychology
Positive Behaviour Support Service
The Positive Behaviour Support service from CAMHS provides intensive behavioural analysis and therapeutic intervention for Children and Young People (CYP) with a learning disability and or Autistic Spectrum Disorder using the standards as outlined in the PBS framework. It is used for people who display behaviour described as challenging, and who are potentially at risk of family breakdown and residential or hospital placement. The approach seeks to understand the reason for children's anxieties and behaviours, and potential triggers and, by understanding the child's motivations in detail, builds on their positive experiences.
The service will carry out a detailed assessment and analysis of a child or young person’s behaviours. It will develop a positive behaviour support plan that everyone known to the young person, can implement in a consistent and effective way.
The service works intensively with identified CYP and their parents and carers.
If a young person needs a Care Education Treatment Review
A child or young person will only require a CETR at the point at which all current community and specialist services have been exhausted.
Care, Education and Treatment Reviews (CETRs)
The original Care and Treatment Review (CTR) policy was published by NHS England in 2015, as part of the wider Transforming Care work.
This was updated in 2017 to include a section specifically for children, and the introduction of Care, Education and Treatment Reviews (CETRs), recognising the importance of the role of education within a child’s life.
CETRs are specifically for children and young people up to the age of 18 who are facing potential admission to, or are patients in, a specialist learning disability or mental health hospital and who are the commissioning responsibility of NHS England or Waltham Forest place base partnership (i.e. they fund the placement).
The CETR is a meeting, chaired by an external professional. It includes representation at the meeting by an expert by experience.
After 18, the young person will come under the adults’ policy and process; this is very similar to the children’s process in many respects. These reviews are called CTRs.
Who can request a CETR
Anyone, including the child or young person, or their family, can request a CETR. However, CETRs cannot take place without the consent of the child or young person, or where this is not possible (either because of their age or they have been assessed as lacking capacity) their parent, guardian or carer.
If you are a young person, parent or carer and want to request a CETR, you need to speak to your social worker, the health professional leading on your or your child’s care, or your or your child’s SEN Officer. They will discuss the request with you and can escalate the request to the responsible commissioner.
The purpose of a CETR
The aim of a CETR is to facilitate a process of exploring alternatives to hospital admission. If this is not possible, it will continue whilst the child or young person is an inpatient, through their assessment and treatment, and their discharge.
There are three different types of CETR
- Community CETR: takes place when the child or young person is living in the community (this could also include if they live in a residential placement)
- Post admission CETR
- Inpatient CETR: takes place when the child or young person is in a specialist learning disability or mental health hospital
A community CETR will take place when it is highlighted that the child or young person is at risk of being admitted to the hospital. The aim of this CETR is to seek alternatives to hospital admission, exploring what other services or options are available to keep the child or young person in the community; this will include exploring the option of a Personal Budget.
Sometimes in an emergency situation, it is not possible for a community CETR to take place. A community CETR should not be used to hold up the process of admitting someone to the hospital if this is needed.
A post admission CETR will only take place if no community CETR took place. It will take place within 2 weeks of admission.
An Inpatient CETR will take place every 3 months whilst the child or young person is in the hospital. The CETR will be solution focussed. It will look at ways to overcome any barriers to the child or young person being discharged and will agree on any actions and timelines for this happening. It will also make clear who is responsible for those actions taking place.
There are principles which sit at the heart of CETRs which the CETR Panel should always uphold. These are:
- Person centred and family centred
- Evidence based
- Rights led
- Seeing the whole person
- Open, independent and challenging
- Nothing about us without us
- Action focussed
- Living life in the community
The CETR must include:
- The child or young person (if they choose to attend)
- Family members (if the young person wants them to be there)
- The responsible commissioner (usually the local place based ICB if a community CETR, or NHS England if a post admission or Inpatient CETR)
- An expert by experience e.g. a person or parent of a child who has been through a similar experience
- Responsible Clinician or Senior Nurse
Other people or services who may be helpful, appropriate:
- Social Worker
- SEND case worker
- School representative
- Youth Offending Team
- Voluntary Community organisations that the young person is known to be involved with
- Virtual School
- Adult social care or Transitions team (if the young person is over 16 years old)
The process uses ‘Key Lines of Enquiry’ (KLOE) which helps to put together a summary and feedback for the child or young person which says:
- Am I safe?
- What is my current care like?
- Is there a plan in place for my future?
- Do I need to be in the hospital for my care and treatment?
Leaving hospital: discharge and post-admission
The CETR itself will not decide whether the child or young person is discharged. What it should do is ensure that there are clear plans in place for when the child or young person is discharged and that the right support is in place to make the discharge a success.
NHS England has developed ‘Discharge Steps and Standards’ to support those involved in the CETR process plan for when someone is leaving the hospital. This includes ensuring there are follow-up meetings and plans to ‘check in’ with the family to ensure that things are working well.
Forensic CAMHS Service
NHS England is working nationally to develop local Community Forensic CAMHS services. These services will be based in the community and will work with local services to support the assessment, planning, and where necessary risk management of CYP with complex mental health needs who may be a risk to themselves or others.