Autism: A child or young person’s rights to a diagnostic assessment, education, health and care

The Access Problem

If you are a parent of a child or young person with an autistic spectrum condition, obtaining a diagnostic assessment is just one of many obstacles. Whilst some parents may fear that the assessment will simply result in an unhelpful “label”, getting a diagnosis can often be the gateway to essential NHS and Local Authority care and support.

The National Autistic Society suggests that 63% of children on the autism spectrum are not in the kind of school their parents believe would best support them. 17% have been suspended from school, 48% have been suspended 3 or more times, and 4% have been expelled from one or more schools.

For children and young people with an autistic spectrum condition, access to education, health and social care provision commensurate with their needs is essential. The starting point to unlock the gateway is a diagnostic assessment because a diagnosis places enforceable obligations to meet assess needs on the responsible public bodies.

When should a Diagnostic Assessment for a Child be carried out?

The Autism Act 2009, resulting strategy and statutory guidelines make it clear that an assessment for possible autism should be carried out for children with suspected autism older than 3 years of age, unless there is evidence of regression in language or social skills, which may necessitate an earlier diagnosis.

How can a Diagnostic Assessment be accessed?

Local Authorities are required by statute to have a clear and simple pathway to diagnosis and assessment. Some diagnostic teams will accept self-referrals but more commonly a referral from a GP or health professional is needed. The National Institute for Clinical Excellence (“NICE”) have published clear guidelines on autism recognition and referral. Any GP should be following NICE Guideline 128 and be aware of statutory guidance mandating referral in appropriate cases.

The Diagnostic Assessment for Children

Once a referral for a diagnostic assessment has been issued, a Local Authority must arrange a comprehensive assessment to be undertaken by professionals who are trained and competent, drawing on a range of differing professions and skills.

In the case of children and young persons, this may include a paediatrician, child & adolescent psychiatrist, speech and language therapist, clinical psychologist, educational psychologist, social worker, and where relevant support staff. Wherever possible the assessors must involve the parents and carers of the child concerned, and use documentary evidence where possible of behaviour and development.

What should a Diagnostic Assessment consider?

  • The parents, carers, child or young person’s concerns;
  • The child or young person’s experiences of home life, education and social care;
  • A developmental history, which focuses on developmental and behavioural features against an autism specific tool;
  • Assessment of social, communication and behavioural skills;
  • A medical history;
  • A physical examination;
  • Consideration of the differential diagnosis;
  • Assessment for conditions that may co-exist with autism; and
  • Development of a profile that details strengths, skills, impairments and needs which can be used to create a needs-based management plan.

What happens if Autism is diagnosed?

The findings of the Diagnostic Assessment should be communicated to the child or young person and their parents. A follow up appointment with the autism team should be offered within 6 weeks of the assessment.

Can a misdiagnosis be challenged?

An assessment does not necessarily mean a diagnosis will be made. Difficulties a child or young person is experiencing and their presentation can be misdiagnosed as a learning difficulty. If you believe the evidence suggests your child or young person does have an autistic spectrum condition, but the expected diagnosis is not received, it is possible to challenge the decision. It can often be helpful to obtain a private diagnosis and to document carefully the evidence suggestive of a diagnosis prior to a statutory assessment being made or in support of a challenge.

Provision for Autistic Children and Young Persons

Post diagnosis, an autistic child or young person is entitled to:

  • An assessment by the responsible Clinical Commissioning Group to determine eligibility for NHS Continuing Care.

A Continuing Care package will be required when a child or young person has needs arising from a disability that cannot be met by existing universal or specialist services alone. In this situation, the child or young person is deemed to present with a ‘primary health need’.

The existence of a ‘primary health need’ is determined by an evidence-based assessment process. A Multi-Disciplinary Team meeting (“MDT”) made up of education, health and social care professionals, and family representatives, must be convened to collectively complete the Decision Support Tool (“DST”).

The MDT must take into account the following broad areas of assessment:

  • The preferences of the child or young person and their family.  
  • A holistic assessment of the needs of the child or young person and their family.
  • Reports and risk assessments.
  • Evidence collated when completing the DST.

The DST is divided into 10 areas of need, known as domains. The MDT will use the descriptors to determine whether a child or young person’s need in each domain is of a Priority, Severe, High, Moderate, Low or No level of need.

The completion of the DST, combined with consideration of the broad areas of assessment, will enable the MDT to consider whether the child or young person has needs which cannot be met by existing services alone.

In the case of a child or young person with autism, it is recognised in the National Framework (the rules which govern the assessment process) that the MDT must consider the extent to which there is a Continuing Care need due to challenging behaviour. 

If a child’s needs are not complex enough to warrant a package of Continuing Care, the assessment will nevertheless serve as a platform to ensure all a child’s needs have been identified. Importantly the assessment will also act as a mechanism to access referrals to other NHS services such as Child and Adolescent Mental Health Service (“CAMHS”).

  • An assessment by the responsible Local Authority, known as a ‘child in need assessment, to determine precisely what the child’s social care needs are, and identify how those needs ought to be met.

It is at a Local Authority’s discretion as to whether or not to complete this assessment in conjunction with an NHS Continuing Care assessment. A Local Authority has a discretionary power to charge for the provision of services to meet social care needs.

Services must be provided where it is determined that the provision of services is “necessary” to meet a disabled child’s needs.

  • An education, health and social care needs assessment to determine whether it is necessary for ‘special educational provision’ to be made in accordance with an Education Health & Social Care Plan (commonly referred to as an “EHCP”).

Special educational provision’ means provision that is additional to or different from provision made generally for others of the same age in mainstream education settings.

An EHCP provides the opportunity to pull together all of the child or young person’s education, health and social care provision.

If an EHCP is drafted correctly, it can also create specifically enforceable rights to specified and quantified provision.

With this in mind, it is best practice to ensure that an EHC needs assessment is not conducted until all the necessary health and social care assessments have taken place.

It will be very difficult to accurately specify and quantify the health and social care provision the child or young person requires within the EHCP without sight of all the health and social care assessments.

  • A transition assessment to ensure a smooth transfer from children’s to adult services is achieved.

For those in receipt of a social care package, this should take place before the child or young person turns 18, if it appears likely that the child, young person and/or carer will have care and support needs after the child or young person turns 18. It must also be demonstrated that it will be of significant benefit to have those needs assessed.

If the child or young person has a package of Continuing Care, screening and assessment for eligibility for NHS Continuing Healthcare (NHS funded care for Adults aged 18+) should begin at age 16.

A transition plan must be completed at the annual review which coincides with when a child or young person is 14 if an EHCP is in place. The plan should be reviewed at every annual review thereafter.

Need Advice?

At Lester Aldridge we support families affected by Autism both in relation to the diagnostic assessment and resulting care planning process. We not only challenge misdiagnosis cases where there has been a failure to properly assess, but in addition, we can act to ensure education, health and social care provision is awarded commensurate with need.

If you have been affected by the issues raised in this article, please contact a member of the Community Care Team at Lester Aldridge.

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28 Feb 2019

By James Pantling-Skeet
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