Children and young people - national neurodevelopmental specification: principles and standards of care

Appendix 1

National Neurodevelopmental Specification for Children and Young People: Principles and Standards of Care (Neurodevelopmental Specification)

1 Neurodiversity: Definitions and our Approach

"In my career, I cannot remember coming across a completely normal or typical child (or adult for that matter)" Professor Chris Gillberg.

1. Terminology:

• Neurocognitive functions are selective aspects of brain functions - the ability to learn and use language, the ability to regulate attention, emotions, impulses (including movements and spontaneous utterances), social behaviours, and process sensory stimuli. Like height, these traits may be significantly genetically influenced, and are present from birth. Like height, the statistical normal range changes, dependant on age. The societal norm for a selective neurocognitive function is defined by the general population and may be variably and narrowly defined.

• A Neurodevelopmental disorder is a term reserved for those who present with a 'functional' impairment in day to day life due to difference in one or more neurocognitive function which lie at the extreme of, or out with the normal range

• Neurodiversity is the statistical normal range of a function in a population at a particular age. Diversity is a trait of the whole group, not a specific individual.

• Neurotypical describes individuals where a selective neurocognitive function falls within the prevalent societal norm.

• Neurodivergent describes individuals where a selective neurocognitive function falls out with the prevalent range.

1.2 In addition we know that the child or young person's presentation is heavily influenced by their current and past social and physical environment. Although this affects all children, there are adaptations that are particularly recommended for those with Neurodevelopmental disorders. The following terminology requires explanation:

• Naturally occurring environments are: home, early years establishments, school and community settings where the child and family spend day to day life
• The Physical Environment is the physical properties of the buildings, room or spaces and the resources within each
• The Social Environment is the actions and attitudes of the people around the individual and family

Wider determinants of health which can increase the risk of inequality are referred to here as poverty, equality characteristics and adverse childhood experiences.

2 Assessment, Formulation and Recommendations

2.1 Children, Young people and Young adults may require neurodevelopmental assessment when they present with additional support needs arising from environmental barriers to participation in daily life and differences in:

• Communication, interaction and broad social functioning
• Emotional Regulation, and Attention
• Development and Intellect
• Co-ordination and movement

2.2 These problem areas often overlap. Some children will have a combination of these problems at lower levels and this may impact more than children with a single higher level of problem. In order to achieve a whole system approach the neurodevelopmental specification needs to be cross sector and involve health, education, social services and third sector.

3 Roles

Children's Services Providers are responsible for providing the range of activities and supports described in the Neurodevelopmental Specification, including:

• Deliver and co-ordinate neurodevelopmentally focussed parent supports and interventions.
• Develop training/ key messages and lead joint health and education training team.
• Provide coaching and mentoring for health and education professionals at 'enhanced' and 'skilled' level.
• Triage requests for assistance, identifying complex and core presentations and relevant pathway.
• Deliver multi-disciplinary complex assessment and interventions and advise on complex cases
• Advise on strategic planning and undertake cycles of evaluation
• Review scientific evidence for practice and lead innovation

3.1 This paper starts from the premise that neurodiversity exists across society.

At each developmental stage there are 'neurotypical' or more commonly occurring presentations and 'neurodivergent' or less commonly occurring presentations across a range of developmental skills.

3.2 The differences that are seen may or may not lead to impairments or deficits depending on a range of factors, many of which relate to the social and physical environment.

3.3 There is increasing support in the literature for taking a 'Neurodevelopmental' approach to understanding the range of ways children, young people and adults present.

3.4 The presence of neurodivergent traits, together with environmental factors may lead to impairments in a child or young person's daily functioning.

3.5 Wider determinants of health may also increase vulnerability for children (e.g. poverty, equality characteristics, and adverse childhood experiences) and significantly increase the risk of poor outcomes of children and young people in this profile group.

3.6 Factors increasing the risks of neurodevelopmental disorder arising are wide ranging and include: fetal alcohol/substance exposure, in utero-trauma and/or infections to birth mother, prematurity, family history of neurodevelopmental disorder(s) chronic physical and/or mental health conditions. In many cases there are no identified 'causes' for neurodevelopmental disorders.

3.7 Additionally there is potentially increased risk of functional impairment in children and young people with neurodevelopmental disorders linked to poor attachment and/or neglect in early months, high levels of parent stress associated with chronic physical and/or mental health conditions and the experience of environments at home, school and in the community which do not match the individual's needs/ capacity.

3.8 Children and young people and their families may require support when there is evidence that development in the following areas is impacting on functioning in day to day life (e.g. play, learning and daily routines):

• General development
• Learning and cognition
• Motor development
• Sensory processing and reactions
• Speech, Language and Communication
• Social Interaction/ reciprocity
• Emotional regulation
• Activity or impulsivity
• Attention and concentration
• Imagination and interests
• Stereotypic, insistence on sameness, tics, obsessive routines
• Sleep – disrupted sleep-wake cycle, sleep onset problems, night waking problems
• Feeding – food fads, selective or consistent food refusal.
• Psychological adapt

These problem areas often overlap. Some children with a combination of those problems at lower levels, might be more impacted than those with a single higher level of problem.

3.9 Behaviour is not, in itself, a neurodevelopmental feature. It is influenced by all of the above 'within child' factors together with 'environmental' factors. It is a means of communicating a wide range of responses, emotions and needs. Distressed, passive or unexpected behaviour might be interpreted as 'challenging'. It is important to understand why it occurs.

3.10 Around 25% of mainstream pupils in Scotland have additional support needs. It is now understood that, neurodevelopmental differences leading to additional support needs are more common than previously understood, affecting around 10% of pupils in schools. The Research Advisory Group of The Children and Young People's Mental Health and Wellbeing Taskforce advised:

• Many of these children will have more than one area of difficulty
• Although neurodevelopmental disorders are lifelong, the individual profile and support needs will change over time, as will the adaptations required
• Early identification and support to the child and family will be of benefit
• Wider determinants of health such as poverty, social exclusion and parental stressors, will cumulatively impact upon individual need.

3.11 The prevalence of neurodevelopmental profiles linked to impairment in functioning (see 3.5) has been estimated (by Gillberg and others) to be at least 10% of school age children. Research has shown:

• The Research Advisory Group advised that most of these children could be identified by age 6 years;
• Comorbidity /co-existence of a range of neurodevelopmental needs is common;
• Neurodevelopmental disorders in girls and women are less well recognised or recognised at an older age. Missed or misdiagnosis is also reported (e.g. where there is an eating disorders or severe anxiety);
• Unmet needs or missed diagnosis can lead to persistent problems in adult life (e.g. long term mental ill health, involvement with the criminal justice system);

3.12 Ultimately, all children and families should experience joined up support, based on the single child's plan, with professionals from different agencies working together on a single plan. (GIRFEC Practice Guidance)

4 The importance of Early Identification and the GIRFEC National Practice Model

4.1 The universal Health Visiting Service and GIRFEC National Practice Model provide important cross sector opportunities (across health, education, social services and third sector), to:

• Identify children with neurodevelopmental profiles who are at risk, at the earliest stage
• Contribute to the creation of a relevant individual child's plan
• Identify those children requiring targeted or specialist support through staged intervention
• Identify those children requiring further assessment, formulation, recommendations, and diagnosis where this would be helpful and appropriate
• Provide support through the team around the child to adapt daily routines in naturally occurring environments to reduce the negative impact of neurodevelopmental differences
• Provide adaptations for parents where required (e.g. advocacy, peer support, translation and interpreter support where English is not the first language or where there might be cultural barriers, 'plain English' adapted supports for parents with a learning difficulty)
• Provide adaptations to support such as respite and/or periods of substitute parental care, which take account of the need for carers to understand individual support needs and strategies arising as a result of a neurodevelopmental profile
• Support for income maximisation/financial inclusion
• Signpost to relevant resources and supports

The 27-30 month review and in particular, screening for language development at that stage, is an opportunity to identify children and families requiring further support in the early years.

For children and young people of all ages, the GIRFEC Wellbeing Indicators can be used to guide discussions about how an individual is doing at a particular point in time and if there is a need for support.

In the early years:

• Additional support needs, such as speech, language and communication needs and sensory processing differences or motor development needs, may be identified by professionals or parents/carers.
• The team around the child might include the Health Visitor, Allied Health Professionals, General Practitioner parents/carers and other health, education, social care and third sector professionals.
• Specialist support to make sense of behaviour and to adapt strategies to be developmentally appropriate is also an essential part of the early intervention approach.
• Speech and Language Therapists, and Occupational Therapists and other professionals (using Ready to Act guidance) bring specialist knowledge of neurodevelopment to the provision of Universal, Targeted and Specialist support.
• Good practice involves collaboration and information sharing with consent across the team around the child, including early learning and childcare staff.

4.5 Some children's needs will be affected by:

• Within-family and wider determinants of health (e.g. the impact of poverty and adverse childhood experiences)
• The degree of adaptation provided in naturally occurring environments (at home, school or in the community) and expectations which fit with the child's developmental stage and neurodevelopmental needs.

Where these issues can be addressed, we can be optimistic that the child will respond positively, reducing negative impact and improving development.

4.6 Developmentally appropriate, neurodevelopmental parent supports should be offered, may need to be repeated, and may need to be ongoing as child's needs change. This knowledge should be taken into consideration when undertaking strategic planning (e.g. within the Community Plan, and Children's Services Plan).

4.7 Many children will have their needs met through universal supports in naturally occurring environments (e.g. school and home).

4.8 Some children and young people will require more targeted and specialist support provided by the team around the child and planned and implemented through staged intervention.

4.9 Understanding of support needs can be enhanced by diagnosis but should not wait for diagnosis. For example, children and young people with neurodevelopmental support needs may not meet a have a single area of need that meets criteria for diagnosis but may have a number of areas of need which combined would be more impactful.

4.10 Specialist assessment, formulation and contribution to the child's plan at Lead Professional level can influence support required for the child, young person and family. These children may also meet diagnostic criteria for Neurodevelopmental disorders such as:

• Intellectual Disabilities
• Autism Spectrum Disorder
• Attention Deficit Hyperactivity Disorder
• Fetal Alcohol Spectrum Disorder.
• Developmental Coordination Disorder
• Developmental Language Disorder

4.11 A functional assessment, formulation and outcome can support parents in understanding their child's needs and the reasons for their child's difficulties. Creating shared understandings with parents, children and young people can support the fulfilment of their potential. It can inform:

• targeted environmental adaptations within home and school
• identification of relevant parent and family supports (e.g. financial supports, parent education and training)

4.12 The neurodevelopmental specification, specified below, is built on and complementary to the GIRFEC approach.

4.13 Young adults aged 18-24 (and 26 for care experienced young people) may require both neurodevelopmental diagnostic assessment and a range of universal, targeted and specialist supports in naturally occurring environments of higher education and employment. Transitions from child and young people's services into adult services require individualised planning and easy access to sustained support, which reflects the principles of UNCRC.

5 Responding to Neurodevelopmental Support Needs

The following are evidence based approaches known to be effective in supporting children, young people and their families (See Appendix 2 for references). An individualised approach is essential to take account of individual developmental stage and daily environments. There is no intervention or approach recommended for all children all of the time. The intervention should be required to be discussed fully with all contributors at the Child Planning Meeting, identified clearly within the child's plan and informed by the team around the child (maybe inclusive of health, education, social services and third sector). There should be a cross sector commitment to developing the use of digital platforms on a national level to ensure effective communication is prioritised.

5.1 Approaches informed by evidence base, to support children and young people with Additional Support Needs as a result of a neurodevelopmental profile, and their families:

5.2 Getting it right for Every Child

GIRFEC is a way for families to work in partnership with people who can support them such as health, education, social work and third sector professionals.

• There should be regular communication between health, education, social workers and third sector professionals to promote understanding of support needs to ensure a consistent approach to the individual across settings and to monitor effectiveness of intervention
• Collaborative working across health, education, social work and third sector professionals is expected, to make adjustments to the Early Learning and Childcare environment, school environment and curriculum to meet additional support needs
• Regular assessment of need and planning as needs change, within the Getting it right approach
• Early identification of neurodevelopmental needs, formulation and diagnosis, working collaboratively with the team around the child to contribute to the child's plan

5.3 Formulation and Diagnosis

• Understanding of support needs can be enhanced by formal formulation and diagnosis but should not wait for diagnosis
• Neurodevelopmental Disorders are diagnosed following assessment by a multi-disciplinary team, with appropriate training, skills and skill mix. Assessment findings and evidence from both report and observation are 'mapped' to DSM 5 or ICD 11 diagnostic criteria
• Neurodevelopmental assessment may result in overlapping diagnoses, including: Autism, ADHD, Intellectual Disability, Fetal Alcohol Spectrum Disorder, Developmental Language Disorder or Developmental Co-ordination Disorder

5.4 Evidence based parent and family focussed interventions targeted for children with neurodevelopmental needs are recommended including:

• Parent/ family support to access relevant financial supports and welfare benefits
• Parent/ family should be provided with timely and relevant information about their child's neurodevelopmental profile and local supports
• Parent mediated interventions are particularly recommended for children in their pre-school years (specific to the needs of children and young people with neurodevelopmental profiles)
• Parent/ family education and training specific to the needs of children and young people with neurodevelopmental profiles (pre-school, primary school and secondary stage)
• Group and family work can improve family capacity to cope, increase family functioning and reduce family stress, along with or preceded by good child planning and support
• Access to respite breaks, substitute parents care and family support for families where children and young people have a need in this area

5.5 School and Early Learning and Childcare (ELC) based support and intervention

• An individualised educational programme is recommended
• Universal inclusive classroom and school/ ELC based strategies are usually put in place by school/ ELC staff and may be informed by health professionals working in education settings
• Recommended targeted and specialist adaptations in school include modifications to the social and physical environment
• Health and education professionals should work collaboratively (alongside parents and carers and the young person) to create a shared understanding of the individual's developmental stage and specific support needs and how they can be met in daily environments of home and school

5.6 Higher education and employment support for young adults

• Take a person centred approach and include the individuals' views and preferences
• Ensure adjustments are anticipatory (Equality Act, 2010)
• Provide access to employment supports (e.g. Fairstart, other employment supports focussed on those with neurodevelopmental needs)
• Prepare for transitions and any change in the environment or tasks
• Identify a "key link person"
• Consider adaptations to the physical environments (e.g. providing a quiet space or spaces with reduced distractions)
• Provide predictable routines and create certainty in role expectations
• Create opportunities for activities with low social demands
• Provide pivotal information in clear lists or through visual supports
• Consider advocacy needs

5.7 Environmental Interventions are recommended including:

• Developmentally relevant speech, language and communication adaptations at the universal, targeted and specialist level, through key language partners in naturally occurring environments
• Provision of predictability, routine and structure and consider motivation to support participation and learning in ELC and school settings
• Good inclusive practice in schools supporting impulse control difficulties (e.g. planned movement breaks, seating adaptations)
• Targeted communication interventions (e.g. use of parent mediated interventions supporting communication, use of visual supports and adapted communication and supports for social communication
• Targeted interventions to support independence in self-care, daily routines at home and school/ELC and leisure activities
• Sleep interventions, advice and training for parents and carers opportunities for and encouragement to engage in motivating physical, naturally occurring activities, with tailored adaptations to support motor skills

5.8 Interventions to support emotional regulation

• It is important to view 'perceived difficult' behaviour as distressed behaviour and to consider underlying reasons, related to the neurodevelopmental presentation and the environment – not just seeking 'within child' solutions
• Emotional regulation support should be developmentally relevant and should include environmental strategies, taking account of the range of factors influencing regulation for individuals with neurodevelopmental disorders
• Interventions for some verbal, able individuals may involve elements of CBT or adaptations to CBT interventions

5.9 Medical

• Immediate access to relevant medical treatment if required (e.g. vision, hearing, immunisation gaps, vitamin deficits)
• Medication can sometimes help (e.g. melatonin for sleep, or ADHD medication depending on age)
• Comorbidities requiring acute paediatric care, for example neurological conditions and neurodisabilities

6 Summary

6.1 The National Neurodevelopmental Specification for Children and Young People: Principles and Standards (Neurodevelopmental Specification) will:

• Be based on and embedded within the wider practice and principles of GIRFEC and the GIRFEC National Practice Model.
• Be within a whole system, with a single point of access, whereby health, education, social services and third sector professionals actively seek to understand each other's unique contributions and respect each other's areas of expertise. A stepped and matched care pathway is needed so additional supports from e.g. CAMHS can be accessed as needed.
• Focus on early identification and early intervention, and in particular, early indicators that children, young people and their parents and carers may need support. Early intervention can happen at any age including for young adults, who have left school.
• Work collaboratively as part of the team around the child (which may include health, education, social services and third sector professionals), across the life course through universal, targeted and specialist support.
• Where the team around the child (health, education, social services and third sector) professionals identifies that children and young people require additional help, contribute specialist knowledge to the child's plan and to achieving the targets set.
• Provide modelling, consultation, advice and training and assistance to adopt and implement environmental adaptations described in the Ready to Act guidance (Universal, Targeted and Specialist approaches).
• Provide clear guidance and a single point of access for requests for assistance from health professionals.
• Provide diagnostic assessment and formulation. Share outcomes with family and as appropriate share these with the wider team around the child (with consent).
• Professional staff supporting the implementation of the neurodevelopmental specification will include registered children's professionals with additional training in the identification, assessment and formulation of neurodevelopmental conditions, including:
  • Speech and Language Therapists
  • General Practitioners
  • Paediatricians
  • Occupational Therapists
  • Peripatetic Teachers
  • Educational Psychologists
  • Nurses
  • Clinical Psychologists
  • Social Workers
  • Children and Adolescent Psychiatrists
  • Physiotherapists
• Professionals working in adult services with additional training in the identification, assessment, formulation and diagnosis of neurodevelopmental conditions will support the implementation of the neurodevelopmental specification for young adults who have left school, including:
  • Speech and Language Therapists
  • General Practitioners
  • Occupational Therapists
  • Nurse
  • Clinical Psychologists
  • Social Workers
  • Psychiatrists
  • Further education staff
  • Employment support staff
• Support all parts of the children's and young adults' services system to identify and support individuals with neurodevelopmental profiles and support needs.
• Respond as soon as possible where requests for assistance are made (initially, within 4 weeks), and provide help within 18 weeks (defined as the start of the process of assessment, formulation and completion of child's plan and diagnostic outcome where appropriate).

6.2 The implementation of the neurodevelopmental specification will be systematic, consistent and comprehensive and identify the neurodevelopmental profiles and needs of children and young people at the earliest possible stage, following receipt of requests for assistance from professionals already involved, and also from families and carers.

6.3 A timely response to requests from families and carers who have concerns about their children's neurodevelopmental profiles and needs can reduce family and carer stress, improve confidence in adopting positive and supporting parenting approaches, and receive support, guidance and interventions that are tailored to the needs of their children, increasing the prospects of early improvements in outcomes.

6.4 The neurodevelopmental specification when implemented will also reduce the numbers of children and young people referred to CAMHS, and rejected, as they do not meet the CAMHS referral mental health and risk/impact criteria.

[NB: children and young people treated in CAMHS will have their Neurodevelopmental needs met within CAMHS to the same standards.]

Stephen McLeod

Professional Advisor: Scottish Government

Chair of the Neurodevelopmental Service Specification Task and Finish Group.