Dr Mark Lovell Hi, my name’s Mark Lovell.  I’m a Consultant Child and Adolescent Learning   Disability Psychiatrist working for Tees, Esk  and Wear Valleys NHS Foundation Trust. I’m   also the Lead for CPD and Training for the  Association for Child and Adolescent Mental   Health. This talk is based upon a framework  that I designed, called the “Identification   of Intellectual Disabilities Framework A2H.  This is for children, young people and adults. So, what is an intellectual disability? An  intellectual disability is an IQ of 70 or   below within DSM-5, which is the American  Psychiatric Association criteria. However,   within the World Health Organization criteria,  ICD-10, an intellectual disability is actually   69 or below. So, there is a difference, in an  IQ point, depending on which system you use. You   also have to have significant difficulties  with your adaptive behaviours. Adaptive   behaviours are your activities of daily living.  So, your daily living skills to do with feeding,   getting yourself dressed, managing time,  co-ordinating yourself with friends and family,   and a whole variety of daily living tasks.  There are four major levels. These are mild,   moderate, severe and profound, and these  all relate to lowering numbers of IQ points. An intellectual disability is also known as  a ‘learning disability’ within the UK. This,   however, overlaps with the term ‘learning  difficulty’, which is an educational term.   Generally speaking, a moderate to severe or  below learning difficulty, in educational terms,   will relate to a learning disability. There are  overlaps with the term ‘global developmental   delay’, which is a paediatric term. And caution  should be, sort of, held, particularly when   reading research or books or information from the  US, where historically, learning disability also   included specific learning difficulties, within  UK terminology, such as dyslexia, that can make   it very difficult to sometimes work out what a  piece of literature or a book is actually about. So, the IDID A2H framework, I created this  as a response to a lack of information out   there, really, about exactly what an  intellectual disability is, but also,   how to use different bits of information  that you may gather along the way to make   a decision about the likelihood of a learning  disability or intellectual disability. This   framework is not diagnostic in its own right.  It is a framework for gathering information,   for sharing information and to conceptualise  and think about, and formulate and generate   a needs-based plan for an individual. It is  used primarily to assist in decision-making. There are long and short versions of this  framework, which are available through   www.acamh.org, within the Intellectual  Disability topic guide. There is extra   information and resources for gathering  information as a professional and also,   an information leaflet for parents and carers  with regards to what information they might   want to bring to an assessment of a young  person or adult’s intellectual disability. So, it’s an A2H framework, so it goes  alphabetically. These are not necessarily   logically in order, but they had to fit the  alphabet. So, A stands for academic. This is   all about academia and education. So, what are  that individual’s, or were that individual’s,   expected attainment levels for their age? You  need to bear in mind that there is a range on   attainment levels, from the most able child in a  class to the least able child at a certain age.   You would also need to think about what are their  current or past academic attainment levels? So,   this is results from exams, their reports  and levels from schooling, college and other   educational establishments, and do we know if  they have a specific learning difficulty, such as   dyslexia or dyscalculia, which would give us some  more clues about where their difficulties may lie? Information from an educational establishment,  from the past or current, is really important   when assessing for an intellectual disability,  particularly when we’re looking at how far behind   somebody may be academically and does that fit  with their IQ and their adaptive behaviours?   Are we seeing any spurious results within that  system? And it’s really important to know how   well a child engaged with education and did  they actually attend when they were a child? It’s important to know what educational  establishments they went to. Did they go   to a specialist provision? Were they receiving  extra help? Were there any, sort of, reasonable   adjustments made to their education, and did they  have, you know, a statement of educational need in   the past or an Education, Health, Care Plan, using  the English terminology, with regards to extra   plans that get your educational needs met? And  what was it for? Was it for behaviour? Was it for   learning? Was it for a disability of a different  kind, perhaps, that they needed provisions for   visual impairment, hearing impairment, or that  they had additional physical health needs? B is behaviours of everyday living. These  are your adaptive behaviours. There are   a range of specific standardised tests  available, and this list isn’t exclusive,   but these may include the ABAS, the ABS or the  Vineland. These standardise your ability with   regards to your daily living skills and  generally, you would get information from   a parent or carer and also, an educational  report. And from those scorings, if you’re   in the lowest two percentiles, so in the bottom  one out of 50 people, the bottom two out of 100,   on average, you would be presenting within  intellectual disability range. It’s really   important to get these results or information  about this, because this adds to a diagnosis. C is for cognitive assessments. These  are standardised assessments or tests,   usually carried out by Psychologists, who are  trained in the delivery and the interpretation   of these. There’s a whole variety of these  based upon age, particularly, or by country,   and also, by length. So, some of the examples  might be the Wechsler Nonverbal, the WIPPSI,   which is for pre-school aged children, the WISC  for children, the WAIS for adults. But also in   the UK, or in England particularly, we have the  BAS, which is used by Educational Psychologists,   which is the British Ability Scales. And there  may be short-forms and brief assessments,   like the kbit2. There are others available  on the market and this list is not exclusive. There may be some other results from  neuropsychology, such as the WRAML   or other tests, which might give you  information specifically about, say,   memory or processing, and a whole variety  of other skills and function that may be   to do with neurological functioning. It’s  important to know if there are specific   deficits there. It’s really important to  know, has a diagnosis already been made? If that is the case, then you may  conclude the same from this assessment,   or from this framework, or you might  decide that something has changed.   Somebody may have deteriorated in skills, or  they might actually have improved in skills,   or the original results weren’t interpretable,  or the ones that you’re gaining now might not   be interpretable, and you’re using  all the information available to you. D is for development. There are a whole variety  of aspects of our lives that we develop within as   children and into adulthood. It would be useful to  know if there are any standardised tests that have   already been done, such as the Schedule of Growing  Skills, the Denver2, which may be carried out by   paediatrics or within child development centres.  The CELF and CELF2, which may be carried out by   speech and language therapy. British Picture  Vocabulary Scales or Baileys, which is also   another assessment of development. There are a  whole variety of these assessments on the market,   and they can give you a clue as to how delayed  and in what domains somebody might have delays. Information may also be gathered  about development from paediatrics,   physiotherapy, occupational therapy, speech  and language therapy, health visiting, GP,   portage workers, etc. There’s a whole variety  of professionals that may be involved with   developmental assessments and treatments. So,  important to know if there are any existing   diagnoses already in place or if there were  global developmental delays. Unfortunately,   global developmental delays do not have a level  of delay attached to them and it is a term that   should really be used before the age of five  and then converted to something else after five. We develop in a whole variety of areas, so  speech, language and communication, gross motor,   fine motor, our social skills, our play skills.  Our behaviours develop over time and also,   our senses develop. So, it’s really important  to think globally about somebody’s development,   about impairments and needs  and also, about strengths. E is for environment. This is information from the  home setting, such as parenting styles, stability   of placement. Also from the school setting,  was the child or young person in a specialist   provision? Did they go to school? Did they have  a peer group? What was their peer group like?   For instance, if you went to a mainstream school  and you were the only child with a disability,   your peer group may not resemble that child  and that may have caused difficulties with   peer relationships. Was the child looked after  or adopted? That may give some clues about early   life experiences, but also about the stability of  placements around a child. You may use information   from social care, such as safeguarding or VEMT  proceedings. A whole variety of information may   be available to you, particularly around past  experiences and in particular, about adverse   childhood events, traumatic experiences, such  as abuse, stability of placements, etc., etc. F is factors, so other factors that may be  at play. So, consideration of somebody’s   mental health. If you have an intellectual  disability, you have an increased chance   of mental health problems. But if you were  mentally unwell at the time of your assessment,   it may impact upon your current functioning  and it may give you a diagnosis that you may   develop back out of if your mental health is  treated. So, you need to bear that in mind. Behavioural conditions, such as autism spectrum  disorder, ADHD and behavioural difficulties,   such as challenging behaviours or  behaviours that challenge others,   are also very important to consider, because they  may impact upon schooling, engagement with tests,   but also may interfere with the test results,  such as if you have difficulty concentrating or   if you have difficulty with understanding  questions about social situations. Those   will interfere with your results and  your functioning in everyday life. Physical health is also very important,  particularly if the physical health   involves your neurology and your central nervous  system and your brain. So, conditions such as   epilepsy or a head injury, foetal alcohol  spectrum disorder, hearing impairments,   visual impairments will all impact upon your  ability to do tests and function within your   everyday life. They’re also very important to  bear in mind, if somebody can’t see, for instance,   they’re not going to be able to do parts of  tests that are visual. Or if they can’t hear you,   they’re not going to either engage with education  or learn and understand over time, but also,   unless there are provisions put in place to  compensate for the hearing difficulty. But   it’s very hard to do a cognitive test if you  can’t hear the instructions. So, those aspects   are very important to consider and, for instance,  if you’re having a seizure, or you’ve just had a   seizure before your cognitive assessment,  you need to wait and do it later when   you’re not postictal, or after the seizure. Genetic conditions are very important. There   are many genetic conditions that are directly  linked with intellectual disabilities and other   neurodevelopmental conditions. And these need  to be considered, either to give you a clue that   it is very likely that there is an intellectual  disability, or that it may raise your, sort of,   interest or clinical, sort of, thinking  about that you need to assess for one. Attachment is what happens between a child  and their primary caregiver. If you have an   attachment disorder or difficulties, that  may seriously impact upon your learning,   your engagement, particularly socially  and with communication and language,   and this may continue to interfere with  peer relationships, your daily living   skills and your engagement with education.  So, it’s important to know about attachments. And past or present abuse. This, we know  that abuse occurs more commonly in those   with intellectual disabilities than the general  population. We also know that it may have happened   in the past or currently be occurring and we have  to bear in mind, is now the right time to do an   assessment? If someone’s very traumatised at this  moment in time, it may not be a good time to do an   assessment, or that you may need to engage that  young person for a period of time to be able to   get the best out of them during any testing,  so that they can trust you, as an examiner,   as a Psychologist, for instance, doing a test,  to get to know that child before doing the test. It may also be traumatising being tested,  because if the young person understands   that there may be some outcomes of this and  that they may be presenting themselves as   potentially failing something, some of  the styles of behaviour and engagement   with people may be impacted upon by,  sort of, abuse and attachment disorders. G is about general impression. So, with the  collected information, you need to consider   is it likely the child or adult has normal  intelligence, learning difficulties or an   intellectual disability, or that you still don’t  know? Can anything else explain that child or   adult’s presentation at this moment in time?  Do they have any comorbidities or co-occurring   conditions that either raise your chances of  having intellectual disability or that need to   be considered in greater detail to think through  what’s going on? Particularly, for instance,   say if you identified at this moment in  time, that somebody was scoring on their   assessments as having an intellectual disability,  but they also have ADHD that was untreated. ADHD impacts upon your hyperactivity  levels, or your activity levels.   It impacts upon impulsivity, as well as  attentional levels. If you can’t sit still,   you’re impulsive and you struggle to remember  things or stay on task, it’s very hard to do   an assessment. So, sometimes, you may need to go  away, treat the ADHD and then return, when stable,   to looking at intellectual disability  again, because often, IQ points may go up. It’s important to consider what  is this individual’s strengths   and difficulties? What are their strengths  and difficulties? Because we are heading   towards making a needs-based plan and how  to meet those needs. Knowing that someone   has an intellectual disability is all very  well, but we need to do something about it,   such as reasonably adjusting to their needs, but  also ensuring that their wider needs are also met. So, H is the final section, which is how to  meet their needs, and this is about generating   a needs-based plan upon all the information  that you’ve gathered over the A to G components,   so the framework. And this will consider  mental health, behaviours, other diagnoses,   physical health, education, social care and health  in general. So, it’s really, really important to   think through meeting somebody’s needs as the  primary outcome of this framework, rather than   just the diagnosis. Irrespective of whether a  diagnosis is made, this person has been presented   for an assessment. It is likely that they do  have some additional needs that need to be met. So, within the ACAMH website there is a written  version of most of what I have said. There’s   a short version and a long version and some  information for parents and carers. These versions   can all be freely used and distributed and printed  out, and should they want – should anyone want   to use them clinically, there is a clinical  framework and this resource itself is either   here to be shown to others freely or the slides  can be used and adapted, if necessary, to a local   service and you can use a set of slides. It’s  all freely available, but are copyrighted,   so cannot be used commercially. However, if  you wish to use these in any great detail,   I would like to know about your experiences, and  you can contact me through mark.lovell@nhs.net. So, thank you for listening to this presentation,  and good luck with using the framework.