Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher
The ‘Inverse Care Law’ says those who need it most are the least likely to get it.
In Neurodevelopmental Disorders/Neurodiversity services- how can we ensure more children and young people who need the support get it and we reduce the inequity in provision across conditions.
There is extensive evidence that Developmental Disorders(conditions) /Neurodiversity co-occurs often e.g. Developmental Co-ordination Disorder (Dyspraxia), Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Dyslexia and Developmental Language Disorders (DLD).
Services are often delivered for single conditions separated in space and time. Consequently, parents, children, and adults can have poorly integrated care, and transfer from one service to another costing time and money. They often feel confused as they are given different diagnoses and different support.
Present systems struggle to determine who is the most severe, complex, or whose symptoms and what will determine the greatest impact for the person and their family in the short and longer-term. Additional financial pressures on services, along with varying waiting lists and lack of provision for some conditions, are driving the need to develop cost-effective solutions. This is especially true as we know that Neurodiversity is not a ‘thing that is just present in childhood’.
With 1 in 8 children and young people having one or more neurodiverse conditions( but not all with diagnoses) then this is a lot of numbers to manage effectively!
There is a strong rationale for potentially delivering more equitable provision, involving all stakeholders, by placing services in the community, increasing access, and attempting to match children and adults to the most appropriate clinicians across all developmental disorders.
In the last 15 years with esteemed colleagues, I have been writing about the need to consider integrated services, common language, and clear pathways. We came from it from different perspectives :
- What do professionals know about other developmental conditions apart from the ones they look for?
- Do they consider co-occurrence in their day to day practice?
- What could working together look like?
- What do other places do?
In 2005 I asked….
Do teachers know more about specific learning difficulties than general practitioners? (https://onlinelibrary.wiley.com/doi/abs/10.1111/j.0952-3383.2005.00384.x)
In 2007 with colleagues Baudinette and Sparks we did a survey of knowledge and confidence:
Survey of Paediatric Occupational Therapists’ Understanding of Developmental Coordination Disorder, Joint Hypermobility Syndrome and Attention Deficit Hyperactivity Disorder (https://journals.sagepub.com/doi/10.4276/030802210X12813483277143)
In the same year, we asked whether other professionals should consider DCD (Dyspraxia) when doing an assessment for ADHD as 40% of children have both present!
Kirby A, Salmon,G, Edwards,L (2007) Should Children with ADHD be Routinely Screened for Motor Coordination Problems? The Role of the Paediatric Occupational Therapist. The British Journal of Occupational Therapy, 2007, Vol.70(11), pp.483-486
"With 1 in 8 children and young people having one or more neurodiverse conditions( but not all with diagnoses) then this is a lot of numbers to manage effectively!"
In 2008, Dr Gill Salmon and I discussed the needs for services to be in schools for CAMHS:
Salmon, G., & Kirby, A. (2008). Schools: Central to providing comprehensive CAMH services in the future? Child and Adolescent Mental Health, 13, 107-114. doi:10.1111/j.1475-3588.2007.00468.x
In 2018 Dr. Deb Judge and I wrote a full article about reversing the inverse care law which highlights co-occurrence and the need for clear pathways.
Specialist services in the UK are generally delivered by pediatricians, allied health professionals and child, and adolescent mental health services, who are usually based in hospitals or specialist clinics. Children and their parents gain a referral through gatekeepers. Routes into services may vary from area to area with some areas in the UK have developed pathways into the services.
Social and family factors may make it harder for some families to seek help or access it even if they are referred. Clinical services, when based at a hospital rather than the community, may make it harder for some parents to attend because of family and social barriers. Arranging childcare or losing time from a vital job to spend hours traveling back and forth to a clinic may result in non- attendance, which may be interpreted as a sign of disinterest. Poor literacy skills may additionally make it harder to read relevant information that is sent. Parents may also have developmental disorders themselves resulting in cumulative challenges. Looked After Children (in the care of the state) despite the recognition of nine times higher rates of Special Educational Needs are less likely to be identified and assessed as they may move from area to area or miss out on being in school.
Knowledge and Training
Knowledge of different conditions will vary depending on the training available. Awareness levels of conditions such as ASD have increased in the past few years and seen legislation put in place to support individuals e.g. in England, the Autism Act. However, the level of awareness remains lower for conditions such as DCD/DLD and ADHD despite them being present as well for many children and adults.
Where can we start?
Providing knowledge and awareness of typical developmental milestones across cognitive domains by all persons working with children and adolescents would seem a sensible approach. This needs to include early years’ professionals, teachers, social workers, youth workers, health visitors, and GPs. If this is undertaken then there is more chance of triggering an alert to recognize developmental problems, and to do something such as providing practical advice or generating a ‘red flag’ for further investigation. Having this in place is particularly important for parents who may be less aware that late walking or late talking may be a problem. They may have had similar challenges themselves when young, and not had this identified either.
A common language can help – so we all mean the same thing – the parent is hearing different terms used in different ways by different people- and this is really confusing for all- specific learning difficulties/developmental disorders, ASD/aspergers; DCD/Dyspraxia etc..
Blandford (2017) in her book ‘Born to fail’ also describes possible mechanisms within the education system, which may contribute to missing opportunities for identification. This means some children may have teachers that are less well trained, parents who are less vocal or less informed to trigger further support.
Triggering further support
Determining a set of red flags for action seems to be sensible. Early identification of these ‘red flags’ should ideally alert the clinician to screen for challenges across other domains, especially in higher-risk groups. I have coined the term ‘learners of concern’. While population screening is not a consideration, screening higher-risk children for developmental disorders/conditions may be more cost-effective e.g. those in care/LACYP and those who have been excluded from school for behaviour, for example, I see as a good starting point.
This may also include the following for example who we know have a greater risk factor for having developmental delay or difficulties of one or more kinds:
- Premature children
- Children with a family history of speech and language delay/other developmental conditions
- Reported parental concerns
- Teacher concerns
- Significant ACEs and Fetal Alcohol Syndrome
- History of Traumatic Brain Injury
Reducing the barriers to entry
The barrier to entry to gain support for some parents is high and can be is often related to reaching a set of scores in an assessment their child has to undertake and may not be related to the overall level of functional impairment of the individual or their needs. The scoring may be a means of managing service delivery and creates the bottleneck.
Delay in referral and support has a cost. It may mean the person pops up at a later point and has now got mental health challenges, low levels of educational attainment or sadly is in a criminal justice setting (thus costing governments twice as much).
If a family doesn’t know where to go this can result in the ‘challenges’ emerging.
Negative behaviours can emerge with increasing self-awareness of difficulties by the child or young person. The primary challenge may become hidden and then can be not considered. In addition, in desperation where parents have some personal funds they may end up choosing alternative pathways for support where there is often less censorship or control over what takes place and the probity of the service delivered. As a consequence, the promotion of cures and ‘quick fixes’ are seen as alluring to desperate parents faced with no alternatives.
The impact can be on a parent giving up their job to cope with their child’s needs. Cleaton, Lorgelly and I in 2018 published work relating to costs- monetary and on emotional wellbeing for parents of children with DCD/Dyspraxia:
( 3-5% of the school population) HTTPS://WWW.NCBI.NLM.NIH.GOV/PUBMED/30536221
Despite an aspiration for a holistic, integrated care pathway for children and youth with neurodevelopmental disorders (NDD), in reality, putting inter-agency care pathways into practice has proved problematic. One community-based approach that has been developed in Canada, the Partnering for Change (P4C) model was developed because of a problem managing long waiting lists for assessment of DCD.
Its key approach is developing a partnership between the therapist, educators and parents to enhance children’s participation. This has been developed with a focus on children with DCD/Dyspraxia. An important element of this is that the occupational therapists collaborate and coach teachers in context, right in their classrooms. This results in a gain in confidence and a greater ability and capacity to recognize, accommodate, and support the children who are most commonly referred to school health services. It also skills the teacher to manage challenges they may see with other children that wouldn’t necessarily be referred but are nevertheless impacting on functioning.
I see this approach could be one that is extended to include other health care professionals such as speech and language therapists and would result in the up-skilling of teachers and teaching assistants in schools. In 2015, I was part of a review with colleagues to consider the best management principles for clinical practice in DCD/Dyspraxia and this again highlighted the need for graduated approaches and clear pathways.
Best practice principles for management of children with developmental coordination disorder (DCD): results of a scoping review.
CHILD CARE HEALTH DEV. 2015 Jan;41(1):147-59. doi: 10.1111/cch.12128. Epub 2014 Jan 6. HTTPS://WWW.NCBI.NLM.NIH.GOV/PUBMED/24387638
However, little work has focused on upskilling professionals such as youth workers, cub scout leaders, youth offending teams and social workers who work with children who potentially have DCD and may also have some skills and knowledge about how to refer for advice and guidance.
A whole-school approach with nurture centres in each school (not exclusion units) changes the paradigm of support with interdisciplinary teams coming into school and working together to help the child as a whole and upskill staff in the school.
The nurture centres could provide a real positive hub for parental training and community links too. They can provide a place also for teachers within the school to gain advice and guidance in an ad hoc manner and act as a ‘drop-in’ advice and guidance centre a bit like Citizens Advice!
Myself and colleagues including Dr Ian Smythe have developed, tried and tested Do-IT Profiler school web-based package for screening for ‘learners of concern’. It provides practical guidance for schools taking a whole-person approach to supporting each child and has the means of upskilling staff alongside the information gathered about neurodiversity to increase confidence for all.