Profile of neurodevelopmental and behavioural problems and associated psychosocial factors among a cohort of newly looked after children in an English local authority

Abstract

Limited research has been undertaken into the neurodevelopmental profile of looked after children and young people who are known to be highly vulnerable to mental and physical health morbidities. This study seeks to assess the prevalence of childhood neurodisabilities and related neurodevelopmental, emotional, behavioural and intellectual problems (NDEBIPs) among a cohort of children coming into care in an English local authority. A retrospective review of all referrals to a local authority health team between January and December 2018 was carried out as part of its clinical governance strategies. No identifiable patient record was used and no research ethical approval was required. A total of 56 out of 80 (70%) children had at least one or more NDEBIPs (average of two), including behavioural (32.5%) and emotional problems (16%), attachment difficulties (14%) and speech/language delay (12.5%). This compares with a prevalence of up to 15% reported in normal childhood populations. Fifty-one (91%) of the looked after children and young people with NDEBIPs experienced at least one or more psychosocial adversities/trauma (average of five). Each of them received help from an average of four multidisciplinary professionals including social workers, dentists, opticians and health visitors and had an average of three physical/mental health diagnoses. The implications of this high prevalence are discussed together with recommendations arising from clinical experience. Particularly salient is the need for planning future integrated multi-agency services to meet children’s complex needs.

Keywords

Looked after children integrated services special educational needs developmental delay adverse child experiences learning disability

Introduction

Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to disturbance of the brain and/or neuromuscular system and create functional limitations, including cerebral palsy, epilepsy, severe visual impairment, autism spectrum disorder (ASD) and learning disabilities. These disorders often co-occur and their impact may include disturbances of movement, cognition, hearing, vision, communication, emotion and behaviour (Morris, et al., 2013; NHS England, 2013). Childhood neurodevelopmental, emotional, behavioural and intellectual problems (NDEBIPs), such as behavioural difficulties, attention deficit hyperactivity disorder (ADHD), tics disorder/Tourette syndrome, developmental delay and development co-ordination disorder (DCD), are commonly managed by community child health paediatricians. They work in an integrated holistic team alongside education, social care and the voluntary sector and include health visitors, nurses, social workers, education specialists, occupational therapists and physiotherapists (Gillberg, Fernell and Minnis, 2013; Ogundele, 2018).

A wide range of prevalence rates for NDEBIPs has been reported in developed countries, based on varying methodologies and definitions. Rates of up to 15% among normal childhood populations have been found (Blackburn, Read and Spencer, 2012; Parsons and Platt, 2013; World Health Organization, 2011).

Limited research has been undertaken into the neurodevelopmental profile of looked after children and young people who are known to be highly vulnerable to mental and physical health morbidities. Children who become looked after (usually by the local authority in the UK) and their families have often faced exposure to adverse early traumatic life experiences, such as prenatal exposure to poor nutrition or neurotoxins like alcohol, tobacco or illicit drugs, postnatal abuse, neglect, family stress, loss and inter-parental violence, with well-documented enduring serious damage to several areas of child development, including emotional, cognitive, behavioural and educational domains (Romano, Babchishin and Marquis, 2015; Teicher and Samson, 2016). There is clear evidence that the early years are critical for brain development and early exposure to traumatic experiences has a profound impact on children’s cognitive, social and emotional development, which affects them into later life (Department for Education, 2019a).

Only 50% of children who had ever needed social work support between 2012/13 and 2016/17 were able to achieve a good level of development in the early years, compared to 72% of those who had no involvement with welfare services. There is also a high prevalence of social, emotional and mental health special educational needs among looked after children in schools, with the most recent statistics for England showing that 12% of children in need were diagnosed with a learning disability while 35% of them had special or additional educational needs (Department for Education, 2019a).

Previous research has shown that up to 45% of looked after children and young people in the UK are known to have a clinically recognisable emotional or behavioural disorder (conduct or hyperkinetic) compared to the national prevalence of 10% among five to 16-year-olds (Office for National Statistics, 2004; Richards, Wood and Ruiz-Calzada, 2006). They also have an increased risk of neurodisabilities (Green, et al., 2016). A recent study of 30 primary school-aged UK adoptees without a history of institutionalisation showed evidence of elevated emotional and behavioural difficulties but mixed results regarding levels of executive functioning when compared to children of a similar age in the general population (Wretham and Woolgar, 2017). More recent longitudinal cross-sectional studies have confirmed higher prevalence of various NDEBIPs among children and young people previously exposed to early childhood maltreatment, including abuse and neglect (Dinkler, et al., 2017; Stern, et al., 2018).

Some researchers have argued that any young people with a history of previous exposure to abuse or neglect should be referred to specialist services that assess them for a wide range of neurodevelopmental disorders, coined as ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations), leading to multidisciplinary evaluations and long-term follow-up by community child health paediatricians, psychologists, speech therapists and other allied health care professionals (Gillberg, et al., 2013; Minnis, 2013).

So, while the health and developmental risks facing looked after children and young people are beyond doubt in the light of all this evidence, we sought to clarify the situation further with a retrospective study that assessed the prevalence and determinants of various neurodevelopmental disorders among a cohort of all children and young people coming into care in an English local authority in the calendar year January to December 2018.

Methods

A retrospective review audit was undertaken of the medical records of all children and young people who newly became looked after by the North Somerset Local Authority in South-West England between 1 January and 31 December 2018. The children were referred to the looked after children team within the Community Child Health department for their statutory initial health (or adoption) assessment. Those who had been in care for more than three months previously or who had any previous statutory health assessments were excluded.

This audit was conducted as part of an integral strategy of clinical governance within the local authority and no research ethical approval was required. Non-identifiable demographic data and clinical information were recorded on the proforma used.

Emotional and behavioural difficulties, sleep and developmental or learning problems were identified from the medical history obtained from multiple sources or face-to-face interviews and from clinical assessment. The young people were not subjected to any additional specific screening using psychometric tools. The term ‘behavioural difficulty’ was used to cover a range of conduct, defiant, oppositional or challenging behaviours obtained from the medical history. The category ‘visual problems’ included common childhood refractive errors, short- and long-sightedness, squint and astigmatism. ‘Hearing problems’ included glue ear and sensorineural hearing impairment from any cause. ‘Learning difficulties’ incorporated any range of characteristics from clinical history or school reports that indicated a child experiencing problems in a traditional classroom setting, including specific disabilities like dyslexia and dyscalculia or generalised intellectual disability. ‘Attachment difficulties’ were diagnosed based on careful observation of insecure behaviour patterns and agreement by at least two professionals, including experienced social workers and other health care or educational practitioners (NICE, 2015). ‘Self-harm’ was defined when any looked after children and young people had a history of hurting themselves on purpose with a range of behaviours within the previous one year. ‘Substance abuse’ was coded for any harmful or hazardous use of psychoactive substances, with a potential negative impact on physical functioning or mental health, and included alcohol and illicit drugs. However, smoking cigarettes or drinking excessive amounts of coffee were excluded from the definition used in this study.

The prevalence of various NDEBIPs in the general childhood population was identified from several research publications (list of references available on request).

Statistical analysis

Chi square (with Yates correction when relevant) was used for comparisons of proportions among groups of children and T-test was used for comparison of two means. Analysis of variance (ANOVA) was employed when testing for differences between three or more means and Spearman’s rank correlation coefficient was used to determine the relationship between the different proportions in a sample in discrete nominal groups. Statistical significance was accepted at the p value of <0.05.

Results

Epidemiology and age distribution

A total of 80 children and young people (aged between five months and 18 years 2 months, average of 7 years 4 months) had their statutory initial health assessments during the study period, including five children who were on the pathway for planned adoption. Their age distribution was: infants <1 year (17.5%), pre-school 1–4 years (27.5%), primary school-age children 5–9 years (22.5%), secondary-school age children 10–15 years (17.5%) and young adults >15 years (15%).

Just over two-thirds of the 80 children were diagnosed with one or more NDEBIPs, 56/80 (70%) with an average age of 108 months (ranging from six months to 18 years). The age distribution of the looked after children and young people with NDEBIPs was not significantly different from the entire cohort (T score 1.38, p = 0.17).

Fourteen percent (8/56) of the looked after children and young people with NDEBIPs ceased to be looked after during the study period. There was no statistical difference between this group and the remaining others with regard to age, gender, number of diagnosed NDEBIPs or experience of adverse risk factors.

Of the 56 children with diagnosed NDEBIPs, the pre-school children aged 1–4 years were the largest group (16) while the number for the primary school-age children (5–9 years) was slightly lower (15). The proportion in each age group with NDEBIPs was highest among the primary and secondary school (10–15) groups at 83% and 100% respectively (Table 1).

Table 1.

The background characteristics of looked after children and young people (LACYP) with NDEBIPs.

Age range in year(s)	Number of LACYP (%); N = 56	Age-specific percentages %	M/F ratio (Number M/F)	Average number of professionals involved^£	Average number of diagnoses^£	Average number of risk factors^£
<1	2 (3.6%)	2/14 (14%)	1:1 (1/1)	4.5 ± 2.1	2 ± 1.4	6.5 ± 2.1
1–4	16 (29%)	16/22 (73%)	1:0.8 (9/7)	4 ± 1.1	2.2 ± 1.3	7.3 ± 2.2
5–9	15 (26.8%)	15/18 (83%)	1:1.1 (7/8)	4.1 ± 1.2	2.2 ± 1.6	5.2 ± 3
10–15	14 (25%)	14/14 (100%)	1:0.8 (8/6)	4.2 ± 0.9	2.8 ± 1.4	3.7 ± 2.6
16–19	9 (16%)	9/12 (75%)	1:0.8 (5/4)	4.4 ± 0.9	2.7 ± 1.1	2.3 ± 2.6
Total	–	56/80 (70%)	1:0.9 (30/26)	4.2 + 1.0	2.4 + 1.4	5 ± 3.1
F Score			0.43^$	0.26	0.59	6.48
P value			0.98	0.90	0.67	<0.001**

^£Mean ± Standard deviation

^$chi-square

**Statistically significant

The secondary school children and older adolescents (>15 years) had the largest burden of neurodevelopmental problems (average of 2.8 and 2.7 respectively) compared to the whole cohort (average of 2.4), but this difference was not statistically significant.

Further clinical and epidemiological characteristics of the looked after children and young people, including age distribution, seasonal variability of attendance, clinic non-attendance (DNA) rates, legal status and different types of placement have been described elsewhere (Ogundele, 2018; 2019).

Prevalence of neurodevelopmental and emotional problems

A total of 56/80 (70%) looked after children and young people had an average of two diagnosed NDEBIPs (ranging from one to six, with 70% of them having at least two or more diagnoses). There was an almost equal male/female distribution, with no statistically significant differences between genders (Table 1).

Twenty-one different NDEBIPs were identified, of which the most common were behaviour difficulties (32.5%), emotional problems (including anxiety/depression) (16%), hypermobile joints (14%), attachment difficulties (14%), speech/language delay (SALD) (12.5%), visual problems (11%), learning difficulties (10%), substance abuse (9%), global developmental delay (7.5%) and developmental co-ordination disorder (DCD or dyspraxia) (7.5%) (Table 2). NDEBIPs were further sub-divided into emotional/behavioural (48%), neurodisabilities (34%), developmental (28%) and neurobehavioural problems (12%) (Table 2).

Table 2.

The prevalence of different categories of NDEBIPs among the LACYP compared to the general population.

Categories/diagnoses	Average number of professionals	Number of LACYP	Percent (%), N = 80€	Average age (months) β	Community prevalence %	Z score;$ p value
All NDEBIPs	4.2	56	70 (59% to 19.6%)^β	108	–	–
All Emotional/ behavioural	4.5	38	47.5 (36% to 59%)	134	12.8%	9.3; <0.0001**
Behaviour difficulty	4.5	26	32.5 (22% to 44%)	138	7 to 10%	7.5; <0.0001**
Emotional difficulty	4.6	13	16.2 (9% to 26%)	147	8.1%	2.6; <0.008**
Attachment difficulty	4.8	11	13.8 (7% to 23%)	114	1.4%	9.4; <0.0001**
Substance abuse	4.3	7	8.8 (21%: 11–15yrs) 4% to 50% (33%: 16–24yrs) 10% to 65%	188	17%: 11–15yrs 20%: 16–24yrs	0.4; 0.69 1.5; 0.25
Self-harm	4	5	6.2 (29%: 11–15yrs)	149	22%	0.6; 0.55
All neurodisabilities	4 ± 1	27	33.8 (24% to 45%)	97 ± 67	15%	4.7; 0.0001**
^µHypermobile joints	4	11	13.75%	77	–	–
Visual impairments	4.6	9	11.2 (5% to 20%	127	5.7%	2.12; 0.03**
DCD	4	6	7.5 (3% to 14.5%)	80	5.5%	0.8; 0.43
^µHypotonia	4	5	6.25%	19	–	–
Hearing impairments	5	3	3.8 (0.8% to 10.6%)	137	0.3%	5.6; <0.0001**
Sensory impairments	5	1	1.2 (0.03% to 6.8%)	132	5.3%	1.6; 0.11
Epilepsy	4	1	1.2 (0.03% to 6.8%)	27	0.7%	0.59; 0.56
FASD	4	1	1.2 (0.03% to 6.8%)	27	2%	0.48; 0.63
All developmental	4.3	22	27.5 (18% to 39%)	76 ± 60	12%	4.3; <0.0001**
SALD	4	10	12.5 (6% to 22%)	64	7%	1.9; < 0.053
LD^¥	4.4	8	10 (4% to 19%)	121	2.5%	4.3; <0.0001**
GDD	4.5	6	7.5 (33% <5yrs) (13% to 59%)	64	1 to 3% (<5yrs)	9.4; <0.0001**
Motor delay	4	1	1.2 (0.03% to 6.8%)	13	0.4%	1.2; 0.23
^µAll neurobehavioural	4.6 ± 1.2	10	12.5 (6.5% to 22%	134 ± 56	–	–
ADHD	4.2	5	6.2 (2% to 14%)	134	5%	0.53; 0.61
Sleep difficulties	5.3	3	3.8 (0.8% to 10.6%)	115	25%	4.4; <0.0001**
^µSC concern	4	2	2.5% (0.4% to 9.6%)	152	–	–
ASD	6	1	1.25% (0.1% to 7.7%)	195	1.6%	0.47; 0.64

^β± Standard deviation

^€95% Confidence intervals

^$The z-test for one proportion was used to compare the sample proportion for different NDEBIPs with specified known population proportions (https://www.medcalc.org/calc/test_one_proportion.php)

**Statistically significant

^µNational or regional prevalence values not available

^¥Learning difficulties included any range of characteristics that makes a child experience problems in a traditional classroom setting, such as specific disabilities like dyslexia and dyscalculia or generalised intellectual disability.

ADHD – Attention Deficit Hyperactivity Disorder; ASD – Autism Spectrum Disorder; Cong – Congenital; DCD – Developmental Co-ordination Disorder; FASD – Fetal Alcohol Spectrum Disorder; GDD- Global Developmental Delay; LD – Learning Difficulties; SALD – Speech & Language Disorder; SC – Social Communication.

There were some variations in the distribution of NDEBIPs among different age groups (Figure 1). The commonest conditions among pre-school children (N =18) were SALD (7), hypermobile joints (5) hypotonia (5), global developmental delay (GDD) (4); behaviour problems (BD) (4) and attachment difficulties (AD) (3). Among the school (5–15 years) age groups (N = 29), the most prevalent were behavioural (16), emotional (8) and AD (7), hypermobility (6), learning difficulties (6) and self-harm (5).

Figure 1.

The distribution of NDEBIPs among different LACYP age groups.

The highest burden among the nine older children (>15 years) were behavioural (6) and emotional difficulties (4), substance abuse (4), visual problems (3) and ADHD (2).

The distribution of NDEBIPs among different legal categories under which the children were looked after (e.g. care order, section 20) was not statistically significant (ANOVA (F) score 1.64, p = 0.13) and the highest prevalence was among older adolescents in residential care while the lowest was among those living in kinship placements (3.8 vs 1.3).

Psychosocial adverse/traumatic risk factors

Ninety-one percent of the looked after children and young people with NDEBIPs experienced at least one or more of 19 socio-emotional adverse factors (average of five, ranging from one to 10 per child). Nearly all (91%) of them had at least two or more risk factors. There was a statistically significant association between the number of adverse risk factors and age (Spearman coefficient (R) = –0.8, p = 0.007), as the younger children were disproportionately exposed to a higher number of adverse childhood experiences (ACEs). There was no statistically significant correlation between the number of ACEs and the number of multi-agency professionals involved with the looked after children and young people (p = 0.64) or the number of NDEBIPs diagnosed (p = 0.63).

The commonest adverse factors recorded were parental mental health issues (61%), parental smoking (48%), alcohol or drugs misuse (45%) and learning difficulties (21%). Just over half of the children (52%) experienced neglectful parenting and 48% were exposed to family domestic violence. The adverse psychosocial risk factors were subdivided into four categories as: (1) parental-related (79%), e.g. mental health problems, smoking, drug/alcohol misuse, learning difficulties or history of being in care; (2) family disruption (66%), e.g. neglectful parenting and domestic violence; (3) child-related issues (50%), e.g. physical, emotional or sexual abuse and incomplete immunisation; and (5) prenatal insults (39%), e.g intra-uterine exposure to smoking, stress, illicit drugs and alcohol.

Comparison of adverse risk factors among various categories of looked after children and young people

There was a significantly positive association between average number of ACEs and different clinical and legal status of looked after children and young people (ANOVA F Score 7.4; p = <0.0001) (Figure 2). Those who had only initial health assessments experienced lower average adverse risks compared to those whose assessment was subsequently followed by an adoption health assessment, suggesting ongoing escalation of concerns. The young people who were looked after under care orders experienced a higher number of adverse factors (average of six) compared to those looked after under voluntary section 20 arrangements (4.3). Those in kinship placements were exposed to higher number of ACEs than those in foster homes (averages of seven and five respectively). The looked after children and young people in residential placements (average four) and those who ceased to be looked after (average 3.5) experienced the lowest recorded number.

Figure 2.

The relationship between average number of risk factors and different categories of LACYP’s legal status.

Multi-agency professional involvement

The average number of multi-agency professionals (four, ranging from two to seven) was neither significantly associated with the number of adverse risk factors (Spearman coefficient (R) = −0.14, p = 0.78) nor with age (R = −0.55, p = 0.26), but it had a positive association with the number of diagnosed NDEBIPs (R = −0.98, p = 0.0003). The most common professionals involved were social workers (100%), dentists (86%), opticians/orthoptists (68%), health visitors (30%) and child and adolescent mental health services (CAMHS) (23%).

When the multi-agency professionals involved with the care of the looked after children and young people were categorised into six groups, the rates were as follows: social care and mental health specialists (100%); primary care specialists, such as dentists and opticians (98%); secondary care specialists, such as paediatricians and ophthalmologists (21%); allied therapists, such as physiotherapists and occupational therapists (20%); education specialists (7%); and tertiary care specialists (4%).

Discussion

This study provides health and well-being data on a complete sample of children beginning to be looked after in an English local authority over the period of one year. There is no reason to suggest that it is untypical of the UK as a whole as the characteristics of those in the sample match national figures (Department for Education, 2019a). It was found that while the prevalence of NDEBIPs was relatively low for infants (<1 yr) at 4%, all the other age groups showed similarly high levels – 29% for 1–4-year-olds, 27% for 5–9 years, 25% for 10–15 and 16% for the older adolescents (15+) – demonstrating that overall, 91% (29/32) of all school-aged looked after children and young people children (aged 5–15) in the cohort were diagnosed with at least one NDEBIP. The contrast compared to the national child population is stark: 70% versus 15%. There was already a suspicion that the figures for those in care would be high. For instance, a study of the health needs of looked after children and young people aged 0–15 in London found that around 62% of them were diagnosed with neurodevelopmental problems (Williams and Nicholes, 2016). The present study expands this and confirms the extent of the problem by providing a more detailed description of the different types of NDEBIP involved.

While the increased risk of looked after children and young people being diagnosed with a NDEBIP is high, it varies for the type of problem. Compared with the normal childhood population, the rates for the looked after group were two to four times higher for behavioural/emotional problems and developmental delays and at least twice as high for neurodisabilities. In contrast, the prevalence of epilepsy, ADHD, foetal alcohol spectrum disorder (FASD), ASD, sensory and sleep problems and dyspraxia (developmental co-ordination disorder or DCD) was not significantly raised among the looked after children and young people. However, the prevalence of ASD found in this study is not concordant with some previous research findings, such as by Mooney and colleagues (2009), who reported that 11% of young people in care were on the autistic spectrum. This result might be explained by the different methodology or diagnostic criteria used. Also significant is that this study is based on a ‘movie’ overview of looked after children and young people newly entering local authority care over a specific time period rather than a ‘snapshot’ of all those looked after on a given date. Each type of sample would have produced quite different results, as the latter would contain many more teenagers. For many children in this study, it was probably the first time they had come into contact with diagnostic secondary health care services.

It is also possible that the looked after children and young people identified in this study as having behavioural or attachment difficulties and social communication concerns might have been further examined and received a more specific diagnosis of ADHD, ASD, Conduct Disorder or FASD after undergoing more detailed multidisciplinary medical assessments (Pinto, 2019). In this study, we deliberately avoided the use of the term ‘attachment disorder’, otherwise known as reactive attachment disorder (RAD), for those with attachment problems because RAD is relatively rare in the general population and diagnosis requires specialised tools. When these have been used, rates of up to 19% have been reported among fostered children (NICE, 2015; Woolgar and Baldock, 2015).

The completion of the Strengths and Difficulties Questionnaire (SDQ) for all looked after children and young people has been a statutory requirement since 2009, but there is a wide variation in reported completion rates across local authorities. Only a 75% completion rate for SDQ was reported in England between 2014 and 2016 (Channa, 2017). Moreover, a recently constituted expert working group by the UK’s Social Care Institute for Excellence (SCIE) has advocated more investigation into other validated comprehensive screening tools that might be better suited to the peculiar needs of looked after children and young people and so may be more effective at detecting post-traumatic stress disorder (PTSD), attachment disorganisation and developmental issues such as autism (SCIE, 2017). The SDQ was not routinely used in the assessment of new looked after children and young people in the local authority studied. Nevertheless, whatever the merits of different methodologies, the UK’s statutory looked after children and young people guidance acknowledges that almost half of children in care have a diagnosable mental health disorder and two-thirds have special educational needs (Department for Education and Department of Health, 2015), figures that agree with the prevalence rate of 48% for emotional/behavioural problems found in this cohort.

When the wider context in which these difficulties arise are examined, a mixture of factors emerges. For example, socio-economic deprivation and attachment difficulties in looked after children and young people are known to significantly contribute to their impaired speech, language and communication (SLC) development. But the extent is unclear as although SLC needs are known to be highly prevalent, they remain largely undetected in 60% to 80% of some vulnerable groups of children and young people, including those in care (Cross, 2018; Patalay and Fitzsimons, 2016).

Previous research has shown that abuse and neglect can also have profound negative effects on children’s SLC development. The most common adverse risk factors identified among children in need of social care services support in England between 2012 and 2013 and 2017 and 2018 are similar to our current findings and included domestic violence (39%), parental mental health problems (27%), neglect and different forms of abuse (23%), parental alcohol abuse (15%), parental drug misuse (13%), child mental health (12%) and self-harm (5%) (Department for Education, 2019a). We identified a similarly wide range of adverse risk factors experienced by looked after children and young people including parent-related, prenatal insults, family disruptions and adverse child experiences affecting 91% of those in care with NDEBIPs. While nearly all of these individual problems show raised prevalence for looked after children, it is also important to stress that these life adversities, risk factors and disadvantages are often inter-related and can create synergistic effects leading to poor developmental outcomes, later mental health problems (Arango, et al., 2018) and early death (Murray, et al., 2020).

The need for dedicated preventive early years services

It is now firmly established that the early years constitute a critical period for brain development and any exposure to adversity of prenatal insults or postnatal traumatic experiences, especially in the preschool age, will have profound impact on children’s and young people’s cognitive, social and emotional development, affecting them into adult life (Department for Education, 2019b; Norbury, et al., 2017; Woolgar, 2013). Looked after children and young people are especially vulnerable in this respect and although it is seems something of a chimera at the moment, the need for effective early support is clear to prevent the complex needs of children and families from escalating. The focus of discussion has to be about how, not if, it is to be done.

The essential features of such a service have been identified as being early, prompt identification – specialist, highly tailored, co-ordinated and multi-disciplinary (SCIE, 2017; Woolgar and Baldock, 2015). It is therefore pleasing to know that despite economic constraints, the UK Government is planning to develop more high quality nursery provisions for disadvantaged children by investing in training and professional development for early years staff in disadvantaged areas, promising to spend around £3.5 billion on early education entitlements in 2019 alone (Department for Education, 2019b). It is also introducing a support programme both in the early years and through the school years in 12 pilot Opportunity Areas in some deprived parts of England, with a total spend of £72 million. This intervention is envisaged to boost the development of children and young people’s speech, language and communication skills, and improve their educational attainment and overall life chances (Department for Education, 2019b).

The need for more integrated specialist services

In addition to new initiatives, the NICE Quality Standard (2013) and England’s statutory guidance for looked after children have emphasised that the needs of this group are often complex and can only be met by collaboratively integrated services working across a wide range of settings.

The education of looked after children and young people is a case in point. Department for Education (DfE) reports continually highlight the poor educational outcomes of those in care and stress the need for the social care and educational agencies to work closely together to help children realise their potential (Department for Education, 2019a). The introduction of virtual school heads in every local authority has been an important response to bridge the gap between schools and social care (Department for Education, 2019a; Rivers, 2018). The statutory role of designated teachers for looked after children in all England schools is also helping to provide joined up support to meet children’s needs and find effective ways of engaging these children (Department for Education, 2018). All looked after children and young people are eligible for the Pupil Premium Plus that provides schools with extra funding to plan and deliver appropriate support (Department for Education, 2019a).

It is well known that children with attachment disruptions often experience a range of social, developmental and educational difficulties that do not necessarily reach the diagnostic threshold for a ‘disorder’ and may not meet the threshold for assessment by a specialist child mental health service. It has been advocated that more specialist training and awareness of an attachment framework be made available to all caregivers and practitioners to help them provide the much needed skilled help and support in children’s primary care environment, school and community, and to minimise the impact of trauma on all domains of the children’s functioning (Ratnayake, Bowlay-Williams and Vostanis, 2014).

Fragmented service provision is another common problem for looked after children and young people with multi-morbidity NDEBIPs. A recent special edition of this journal (Adoption & Fostering 43(3), 2019) was dedicated to the biological basis of childhood trauma from early maltreatment and neglect. It emphasised that there is no typical maltreated child, but that each requires individual assessment and tailored supportive interventions. Every child and young person in care with complex presentation requires comprehensive multidisciplinary assessments to help identify the impact of biological, psychological and social factors on their individuality (Woolgar and Simmonds, 2019). Pinto (2019) similarly presses home the compelling need for a comprehensive neurodevelopmental assessment of every looked after child and young person (just as for others living with their birth parents), rather than making the assumption that all their problems are due to unproven ‘trauma and attachment issues’ for which there are no evidence-based interventions. Failure to use such a comprehensive formulation based on a biopsychosocial model will mean that some looked after children and young people with common neurobehavioural disorders, such as autism or conduct disorder, are likely to be missed and prevented from accessing appropriately personalised interventions. This might lead to future escalation and further detrimental impact on their family, academic and social life (Pinto, 2019).

It is pleasing to note that a few pockets of services across the UK are beginning to pilot or implement holistic multi-disciplinary clinical pathways for children and young people with any NDEBIP rather than restricted pathways for individual conditions. Many children suffer some significant neurodevelopmental disabilities that may not reach the threshold for a specific diagnosis but still require comprehensive assessments (Embracing Complexity, 2019). It is also encouraging that a small but increasing number of specialised CAMHS services are being established across the UK, such as the National Adoption and Fostering clinic in London, which offers a comprehensive and holistic assessment of looked after children and young people with complex attachment and trauma related psychopathology and involves their carers in the process (Pinto, 2019). The local authority in this study has a well-established practice of joint clinic consultation for prospective adoptive parents, comprising contributions from a social worker, a paediatrician and a specialist clinical psychologist, and the feedback from parents so far has been very positive. This collaboration has also led to the recognition of local need for a funded multidisciplinary FASD assessment service and formulation of a draft protocol.

Implications and recommendations for practice

All the evidence cited in this article suggests that looked after children and young people aged between one and 15 years are at increased risk of displaying high prevalence of NDEBIPs. The obvious implication of this is that effective strategies for early recognition, diagnosis and management of these problems should be available to all children newly entering care. While the SDQ is commonly used for this in England, several other screening tools are being piloted by the Danish Gillberg Neuropsychiatry and other research centres for better identifying the wide spectrum of ESSENCE disorders. These include the 12-item ESSENCE-Q, the 181-item Five to Fifteen-R (FTF-R) questionnaire and 124-item toddler version, FTF-T (Lambek and Trillingsgaard, 2015) and the Child Evaluation Checklist (CHECK) for preschool children (Rosenblum, et al., 2019).

Emotional and behavioural problems constituted the commonest group of NDEBIPs affecting almost half of the new looked after children and young people. This underscores the need for all new foster, kinship and adoptive carers to undergo initial training with at least annual refresher courses on various strategies for therapeutic parenting, such as PACE (Playfulness, Acceptance, Curiosity and Empathy), and have regular access to supportive interventions and well-trained primary care professionals.

Neurodisabilities affected at least one-third of the looked after children and young people. The commonest were sensory disorders (hearing and visual impairments) and motor disorders (hypotonia, dyspraxia and hypermobile joints). It is therefore reasonable to recommend that all those newly entering care have at least an initial hearing assessment, as well as regular dental and vision reviews. The statutory initial assessments should also determine if formal referral to occupational physiotherapists is required.

A third of the looked after children under the age of five years were identified with global developmental delay (involving two or more developmental domains) with an additional 12% presenting with isolated speech or language delay. This supports the nationally accepted notion recognising community child health developmental paediatricians as the professionals best able to perform statutory IHAs for looked after children and young people, though this is not explicitly mandated in England’s national guidance (Department for Education and Department of Health, 2015). It should be mandatory for very young children to have had a recent developmental screening by their health visitor using the Ages and Stages Questionnaires, or similar tools, as part of the universal healthy child programme for 0–5 years, with efforts made to ensure that the results are available during the IHA. This would also ensure that immunisation records are reviewed and updated appropriately. Accelerated referral pathways for looked after children and young people to be agreed among local health, mental health, educational, social and voluntary sectors including youth offending teams, would be another improvement to current services.

NDEBIPs identified during the statutory IHAs need to be well documented in the young people’s health records and be closely monitored over their period in care to determine if further specialist assessments are required now or in the future. The independent reviewing officer has a central role to play in monitoring the progress of each young person to ensure that any identified physical, emotional and mental health difficulties are followed up during each statutory review health assessment. Each local authority needs to establish easily accessible and clear local referral pathways for its looked after population and carers and to signpost this as necessary (Department for Children, Schools and Families, 2010). This will ensure that children’s health needs are optimally met and that the well-reported risk of long-term deterioration is prevented.

Limitations of this study

While this study has provided a detailed description of common NDEBIPs, together with the clinical and epidemiological characteristics of children and young people newly entering the care of a moderately sized local authority in England, assessed in a single site, there are some potential limitations that may require caution when interpreting the results. The findings may not necessarily be representative of looked after children and young people in other regions of the country and the variety of local specialist support services available for this group is known to be highly variable. As stated, this ‘movie’ sample on which the study is based will show different results form a ‘snapshot’ study of children and young people in care on a selected day; the same is true if ‘live’ medical assessments had been conducted. The findings for looked after children and young people who have been in care for longer periods and who have undergone more detailed multidisciplinary assessments requiring specialist diagnostic tools also might be different, especially for ASD, FASD or ADHD. The retrospective nature of the study may also have implications for possible recall bias, although every effort was made to minimise this.

Conclusion

All looked after children and young people of whatever age are very vulnerable to higher levels of neurodevelopmental, emotional, behavioural and intellectual problems compared to the general population and require early and needs-based co-ordinated support from practitioners working across several agencies. The implications and recommendations for clinical practice have been discussed and several practical initiatives described. To develop services further, the opportunities for preventing the escalation of life adversities and status deterioration among high-risk looked after children and young people need to be more extensively researched and implemented.

Footnotes

Acknowledgements

The author gratefully acknowledges the support of the LAC secretary (Amanda Burrows) and other Community Child Health secretaries.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Michael Ogundele is a consultant paediatrician, Weston Area NHS Trust, Weston-Super-Mare.

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