Learning Disabilities: Dynamic Registers Webinar – 14 December 2016
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This document provides information about a webinar on risk stratification and dynamic registers for people with behaviors that challenge. The webinar agenda includes discussions on risk stratification, consent issues, including children and people with autism but no learning disability on registers, and a question and answer session. The document then discusses risk stratification and identifying risk factors to allow for early intervention. It provides examples of at-risk populations and outlines individual, environmental, and bio-psycho-social risk factors. Finally, it discusses challenges in transforming care and dynamic registers for people with autism but no learning disability.
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Learning Disabilities: Dynamic Registers Webinar – 14 December 2016
- 3. www.england.nhs.uk Topic Time Welcome, housekeeping, agenda 1 min Risk Stratification 15 mins Consent issues and how to get onto the register – a discussion 10 mins Including Children 10 mins Including people with autism and no learning disability 10 mins Questions and discussion 15 mins Close 1 min Agenda : Webinar 2
- 4. www.england.nhs.uk Risk Stratification • Risk stratification should focus on prevention and early intervention with the aim of reducing the likelihood of behaviour that challenges by providing support at an early stage to proactively address these risk factors • It should be recognised that early detection of risk factors and systematic assessments of behaviour is the key to prevention of behavioural difficulties and the basis of early intervention. • The register will include information that monitors whether the individual is effectively supported and reviewed
- 5. www.england.nhs.uk • Helpful to consider the purpose of risk stratification in relation to behaviours that challenge, i.e. what is it for: • To predict who will go on to develop challenging behaviour? Or • To predict when people will present challenging behaviour? Or • To predict how likely a behaviour is to occur? Or • To predict the impact or consequences of a behaviour? Or • To predict the likelihood of a person being admitted to hospital? • To identify support in place/likely to be required? • Service Model intention was using data intelligently to answer as much of above as possible
- 6. www.england.nhs.uk For example: • So a risk stratification approach based on known risk factors would likely prompt early intervention with young boys, with severe learning disabilities and additional impairments or behavioural phenotypes, even before challenging behaviour manifests. • Alternately, identification of populations at risk could focus on highlighting a cohort of people, who may be well-known to services, who have known recent histories of actually presenting behaviours which have the potential for significant harm and which exceed the capacity of families / carers to cope
- 7. www.england.nhs.uk Risk factors • Numerous studies have sought to identify risk factors for challenging behaviour. Some caution is needed in interpreting the findings however. Research often tends to report on correlations between factors and this does not necessarily imply causal relationships. • Few studies specifically report on population risk factors for low frequency, high impact challenging behaviour that may be associated with offending and placement in forensic inpatient settings. • Low numbers but high impact for individuals but a key population
- 8. www.england.nhs.uk Consistent outcomes of interest are summarised below: • Gender • Age • Severity of learning disability • Autism • Epilepsy • Mental Health Needs • Communication • Sensory Impairments • Residential setting
- 9. www.england.nhs.uk • Having a severe learning disability • Having a history of abuse • Having comorbid autism • Having an additional sensory or motor disability • Having mental health problems • Having a communication impairment • Having a personal history of abusive relationships • Certain behavioural phenotypes • Having unmet needs • Having a grossly impoverished quality of life • Sudden changes in health status • Sensory processing difficulties Individual Factors
- 10. www.england.nhs.uk • Having insufficient numbers of skilled people to assist • Support services having high turnover • Those who deliver care and support having a low level of knowledge and skills (failure to understand causes and functions of behaviours) • Multiple partners in care and support working in an uncoordinated fashion • Not engaging service users and families as expert partners in assessment and support planning • Being in an impoverished material environment • Having restricted opportunities for meaningful engagement, social interaction with preferred people and a valued (by the person) lifestyle. • Not being allowed to make choices / decisions (or choices / decisions being ignored) • There are high levels of social control and abuse • There are low levels of social contact • The environment is barren and unstimulating • Access to preferred items or activities is rigidly controlled • High expressed emotion • Other people failing to adapt communication to suit a person with a learning disability or overestimating their abilities. • Restricted access to health surveillance • Poor support during significant life transitions • Changes in carers health or ability to cope • Causal attributions of others Environmental Factors
- 11. www.england.nhs.uk Biological Psychological Social Neurological impairment Epilepsy Genetic disorders Medication, psychotropic paradoxical side effects & non psychotropic medications e.g. digoxin Medical conditions may predispose to depression Sensory impairment Behavioural phenotypes Low self-esteem (repeated failures, dysmorphic features etc..) Deprivation Abuse Repeated separations Repeated losses Overprotection Frustration Impaired impulse and emotional control (possibly due to poor learning or neurology) Insight into disability Stigmatisation Marginalisation Expectations of others Under / over stimulation Inadequate services / resources Risk factors for mental health problems overlap in part, but in other ways differ from those that are specific to challenging behaviour, they include:
- 12. www.england.nhs.uk Bio-psyho-social models • It is clear that the risk factors for the development of challenging behaviour and causative explanations are complex and multivariate. • It is therefore proposed that an integrated approach to conceptualising the determinants of challenging behaviour is appropriate i.e. one which integrates biological, psychological and social models. • It is most likely that for any given person any or multiple factors may be involved.
- 13. www.england.nhs.uk Mapping the determinants of challenging behaviour: Consideration needs to be given to the characteristics not just of the service user, but also to those that support them: The service user The family and those who provide day to day support Support services
- 14. www.england.nhs.uk Protective Factors: e.g. resilient family, skilled carers, effective crisis support, functional assessment and PBS, capable environment, safeguarding procedures, available specialist services; good quality of life. Vulnerable: Mentally ill History of CB Recent worsening of CB Current circumstances resemble those at past high risk times Etc… Resilient: Fit; well; healthy; engaging in meaningful activity; achieving; no history of CB Adversity Challenging environment; burnt out family / carers (unable to cope); abuse; uncoordinated care; inappropriate peer group; disconnected from services; excluded from services; impoverished quality of life
- 16. www.england.nhs.uk Building the Right Support and the National Service Model
- 17. www.england.nhs.uk • Every Transforming Care Partnership should have a lead for Children and Young People • Clear links between Transforming Care Planning, work around the Special Educational Needs and/ or Disability (SEND) Reforms and CAMHS transformation programme • Local areas should understand legislative framework • Service Model should be implemented from the point of view of Children and Young People (and their commissioning needs) Supplement to the Service Model for Children, Young People and their Families
- 18. www.england.nhs.uk Child, Young Person and Family/ Parent Carers I have an enjoyable and interesting life My care and support is well planned I have choice and control about my care and support My family and paid staff get the help they need to support me to live in the community I have a choice about where I live and who I live with I get good care and support from mainstream health services I get expert health and social care support in the community if I need it I get help to stay out of trouble with the law if I need it If I need to stay in hospital because of my mental health or behaviour it is good quality The 9 Principles of the Service Model
- 19. www.england.nhs.uk Transforming care and dynamic registers for people with autism and no learning disability Sarah Jackson
- 20. www.england.nhs.uk People with autism, who do we mean? • Autism • Autism Spectrum Disorder (ASD) • Autistic Spectrum Condition (ASC) • Classic Autism • Kanner’s Autism • Pervasive Developmental Disorder (PDD) • Asperger Syndrome • High Functioning Autism (HFA) But autism is not: • A mental health issue • A learning disability
- 21. www.england.nhs.uk Projecting Adult Needs and Service Information People in the North of England aged 18-64 predicted to have autistic spectrum disorders. www.pansi.org.uk version 8.0 2020 2025 2030 NORTH WEST Total population aged 18-64 predicted to have autistic spectrum disorders 43,178 42,949 42,657 NORTH EAST Total population aged 18-64 predicted to have autistic spectrum disorders 15,699 15,463 15,278 YORKSHIRE AND HUMBER Total population aged 18-64 predicted to have autistic spectrum disorders 33,025 33,088 33,163
- 22. www.england.nhs.uk Falling through the gaps • Undiagnosed autism • Aspergers Syndrome / Higher Functioning Autism • No Education Health Care Plan • Educated at home • Stricter eligibility criteria for CAMHS • Hard to reach families • Transition
- 23. www.england.nhs.uk People in inpatient or residential schools People at risk of admission People known to services Total people with a learning disability and/or autism Identifying people with autism
- 25. www.england.nhs.uk Further questions and open discussion
Editor's Notes
- considerable variation in findings however consistent outcomes of interest are summarised below: Gender There is no compelling evidence of an association between gender and the overall prevalence of ‘challenging behaviour’; however ‘Aggression towards others’ (as a subset of ‘challenging behaviour’) appears slightly more strongly associated with male gender Age The incidence of challenging behaviour peaks across the population between ages 12-35yrs Prevalence increases through childhood and adolescence then levels off and declines: For those with mild learning disabilities the decline in challenging behaviour prevalence occurs from around 19yrs For those with more severe learning disabilities, this decline becomes apparent from 50yrs Some studies suggest that the more severe forms of challenging behaviour are most prevalent between ages 15-19 Self-injurious behaviour is more prevalent in younger (late childhood, adolescence and early adulthood) than older people There is no consistent relationship between age and aggression towards others Severity of learning disability In general people with severe and profound learning disabilities present more challenging behaviour. In keeping with this, challenging behaviour is also associated with people who have greater impairment of adaptive skills; requiring more assistance with eating, drinking, dressing, using the toilet etc.; as well as presenting with more significant communication difficulties. Self-injurious behaviour is more prevalent in those with more severe learning disabilities Aggression is usually reported to be more common in people with severe and profound learning disabilities. The exception to this is that people with mild learning disabilities are more likely to present verbal aggression. Autism There is some evidence that people with learning disabilities who also have autism, may be more likely to present with physical aggression. Epilepsy There is some evidence that comorbid epilepsy may be associated with aggression. However as epilepsy is more prevalent in severe learning disability it may just be serving as a proxy indicator. Mental Health Needs There is evidence that mental health problems may be associated with increased prevalence of a number of forms of challenging behaviour, most notably verbal aggression. Communication There is evidence that communication impairments (particularly receptive) may be associated with a range of forms of challenging behaviours. Sensory Impairments There is inconclusive evidence as to whether hearing and visual impairments are associated with increased prevalence of challenging behaviour. Residential setting Challenging behaviour is more common in people living in hospitals / institutional settings than those in ordinary community settings. It is unclear whether behaviours arise as a result of these environments or alternatively are the reason for placement in the first instance!! Also, people with severe learning disabilities are more likely to live in institutional settings!!!
- In considering the risks either of challenging behaviour developing over the longer term; or of a person being hospitalised in the shorter team, consideration needs to be given to the characteristics not just of the service user, but also to those that support them: