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Children in Care with neurodisabilities including Autism

Autism and other neuro-disabilities and the Care System

This study is being led by a parent.

Most children become looked after as a result of abuse and neglect. It is well known that delays in identifying and meeting their emotional well-being and mental health needs can have far reaching effects on all aspects of their lives. Delays in identifying a child’s neurodisabilities can be equally damaging and indeed compound mental health problems. Given that neurodisabilities are life-long and poor understanding can lead to long-term harm, it is especially important that these too are identified when children enter Care.

There is increasing evidence from a wide range of sources including birth families, adoptive families, foster carers, those working with victims of child sexual exploitation and young people in secure settings that the support neurodisabled children in Care are given, is falling well short of meeting their needs. Reasons for this are varied and complex so what needs to change?

The Care System

Initial research indicates there needs to be:

  • New statutory and practice guidance that places a requirement on local authorities to provide appropriate support to children in Care with neurodisabilities and gives practical guidance on how to do this using evidence from a range of sources including independent research, the Innovation Programme and analysis of practices in local authorities that receive good Ofsted and/or CQC ratings.
  • An enhanced screening programme for children entering Care that flags up indicators that a child may have autism, intellectual impairments and other neurodisabilities. This screening programme could be combined with assessments for speech and language difficulties, often (but not always) an indicator that a child has a neurodisability such as autism. Where professionals are relying on a screening programme rather than assessments to detect neurodisabilities, they must have training in its use and the potential and reasons for false negatives and false positives and there should be a path to specialist assessment and diagnosis irrespective of placement stability.
  • New communication standards such as http://www.england.nhs.uk/accessibleinfo appropriate for children. A common standard should also be used to consistently and uniformly record looked-after children’s neurodisabilities whether for example, flagged up in school by a SEND team, diagnosed before entering Care, detected in looked-after children’s health assessments by health professionals, known to children’s services disability teams or diagnosed within Care irrespective of the setting. Health and social care commissioners should have access to information on numbers and needs of children in Care with neurodisabilities so that they can accurately commission health and social care for this cohort and outcomes for looked-after children with neurodisabilities should be monitored.
  • Enhanced training so all social care professionals from social workers to Independent Reviewing Officers know how to support a child with neurodisabilities including training in how, in their practice, to take account of cognitive or processing deficits and to address sensory needs.
  • New care pathways that meet the needs of children in Care with neurodisabilities. All must understand that a looked-after neurodisabled child’s strengths and vulnerabilities will be different to both their non-neurodisabled and non-looked-after peers and the support each child receives within and beyond Care must take account of this.
  • A requirement for carers to be trained in ways to support children with neurodisabilities including, where appropriate, training that helps them to understand the reasons for and ways to reduce a child’s ‘challenging behaviour’ that results from their neurodisability. This applies to all carers whether foster carers, adoptive parents, staff in children’s homes and in residential settings for children with ‘emotional and behavioural’ difficulties or equivalent.
  • A requirement for LA’s to signpost looked-after children and their carers to mainstream services for children with neurodisabilities including the Local Offer and to address the needs of neurodisabled looked-after and former looked-after children when preparing the Local Offer.
  • A concerted focus on ensuring neurodisabled children’s wishes, strengths and vulnerabilities are taken into account in decision making about them. There should be new practice guidance that shows how to do this. One model could be the Practice Toolkits developed by the Law Society for autistic and learning disabled witnesses. http://www.theadvocatesgateway.org/images/toolkits/3AUTISM211013.pdf
  • embedding practice that support disabled children’s rights to good social and health care. http://cdn.basw.co.uk/upload/basw_30635-1.pdf Adult rights based health and social care practice for people with neurodisabilities should be integrated with and inform statutory and practice guidance particularly affecting looked-after children with neurodisabilities in adolescence and former looked-after children.

Finally

Read debates in the House of Lords on a proposed amendment (57c, Amendments 4 and 5) to the Corporate Parenting Principles within the Children and Social Work Bill to place a requirement on Corporate parents to screen children in the first health assessments for neurodisabilitis here:

https://hansard.parliament.uk/lords/2016-10-18/debates/F87D90E7-21C7-4F40-A6A9-63D754DB02AE/ChildrenAndSocialWorkBill(HL)

If you are interested in contributing to this study please email: looked_after_child@yahoo.com