Autism: An adult’s rights to a diagnostic assessment, education, health and social care provision

The Access Problem

Getting a diagnostic assessment is often the first of many hurdles faced by individuals with an autistic spectrum condition. Whilst seen by many as an unnecessary “label” getting a diagnosis can often be the gateway to essential NHS and Local Authority care and support.

The National Autistic Society suggests that between 44-52% of autistic people may have a learning disability. 70% of autistic adults say that they are not getting the help they need from social services. At least 1 in 3 autistic adults are experiencing severe mental health difficulties due to a lack of support.

These statistics paint a very worrying picture. Of further concern is the reported difficulties many encounter simply getting access to a diagnostic assessment.  It should not be the case that such a large percentage of Adults cannot even access a diagnostic assessment or secure health and social care provision commensurate with their needs. 

When should a Diagnostic Assessment for an Adult 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 if an individual has one or more of the following:

  • Persistent difficulties in social interaction
  • Persistent difficulties in social communication
  • Stereotypic behaviours, resistance to change or restricted activities and

One or more of the following:

  • Problems in obtaining or sustaining employment or education
  • Difficulties in initiating or sustaining social relationships
  • Previous or current contact with mental health or learning disability services
  • A history of a neurodevelopmental condition or mental disorder.

How can a Diagnostic Assessment be accessed?

The route to a diagnostic assessment is intended to be straightforward. Some diagnostic teams will accept self-referrals but more commonly 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 142 and be aware of statutory guidance mandating referral in an appropriate case.

Local Authorities are required by statute to have a clear pathway to diagnosis and assessment.

The Diagnostic Assessment

Where a referral is made seeking a diagnostic assessment, 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. This may include a clinical psychologist, nurse, occupational therapist, psychiatrist, social worker, speech and language therapist, and relevant support staff (e.g. a life skills mentor). Wherever possible the assessors must involve the family and carers of the individual concerned and use documentary evidence where possible of past and current behaviour along with early development.

What should a Diagnostic Assessment consider?

  • Core autism signs and symptoms such as difficulties in social interactions, communication, the presence of stereotypic behaviour, and resistance to change that have been present since childhood through to adulthood.
  • Early developmental history.
  • Challenging behavioural problems.
  • Functioning at home, in education or employment.
  • Past and current physical and mental disorders.
  • Other neurological conditions.
  • Hyper/hypo sensitives and attention to detail.
  • Risks of self-harm, rapid escalation of problems, hard to others, self-neglect, breakdown of family or residential support, and exploitation or abuse by others.

What happens if Autism is diagnosed?

All adults should be offered a follow-up appointment to discuss the implications of the diagnosis, concerns, and any future care and support required.

A care plan should be prepared, which incorporates risk management and how the autistic adult’s needs are to be met. A health passport should be provided which details the person’s care and support needs. A 24-hour crisis management plan should also be considered with input from the mental health team.

Can a misdiagnosis be challenged?

An assessment may not always result in a diagnosis. Difficulties an individual is experiencing and their presentation can be misdiagnosed as a learning difficulty. If the expected diagnosis is not received and you disagree, it is possible to challenge the decision. It can often 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 Adults

Post diagnosis, an autistic adult is entitled to:

  • An assessment by the NHS (the responsible Clinical Commissioning Group) to determine eligibility for NHS Continuing Healthcare (non-means tested) care and support.

NHS Continuing Healthcare is a package of ongoing care that is arranged and funded solely by the NHS where the individual has been assessed and found to have a ‘primary health need’.

This means that the individual’s primary need is for health, not social care, and so goes beyond what a Local Authority can lawfully provide.

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

The DST is divided into 12 broad areas of need, known as domains. The MDT will use descriptors to determine whether an individual’s need in each domain is of a Priority, Severe, High, Moderate, Low or No level of need. Certain characteristics, known as the key indicators, namely nature, intensity, complexity, and unpredictability, and their impact on the care required to manage needs are used to determine whether the quality or quantity of care required is more than the lawful remit of a Local Authority. 

In the case autism, it is often the severity of challenging behaviour, and the impact this has on the totality of an adult’s needs which may be indicative of a primary health need.

The MDT will issue an eligibility recommendation, which may require approval by a Panel. If NHS Continuing Healthcare status is refused, a jointly funded care package may be awarded which means the NHS & Local Authority will split the cost of care but the social care element will be means-tested.

If an adult’s needs are not complex enough to warrant a package of NHS Continuing Healthcare, the assessment will nevertheless serve as a platform to ensure all the adult’s needs have been identified. Importantly the assessment will also act as a mechanism to access referrals to other NHS services such as specialist mental health teams.

  • An assessment by the responsible Local Authority, to determine precisely what the adult’s social care needs are, and identify how those needs ought to be met.

Often an adult needs assessment will be completed independently of an NHS Continuing Healthcare assessment. A Local Authority has a duty to assess need regardless of financial circumstances. The assessment duty is triggered once a Local Authority becomes aware that an adult ‘may be in need of care and support’. 

To qualify for support, the adult must answer “yes” to 3 questions:

1)    Is the need for support because of a physical or mental impairment, or illness?

2)    Is the service user unable to achieve two or more care outcomes (e.g. managing nutrition, maintaining personal hygiene, maintaining a home)?

3)    Could this have a significant impact on the adult’s wellbeing?

If an adult is eligible for support, a written care and support plan must be prepared. The plan should detail all the needs identified and how the Local Authority intends to meet those needs. Local Authority funded ongoing care is means tested. A financial assessment will be completed to determine whether the individual is required to contribute towards the cost of care.

  • An education, health and social care needs assessment (where the individual is under 25 years of age) 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 an adult’s education, health and social care provision. If the adult has not been in receipt of an EHCP previously, it is often very difficult to secure agreement by a Local Authority to implement or maintain an EHCP past the age of 19.

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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