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Dynamic registers

December 2016

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Series of Webinars

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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

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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

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• 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

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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

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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

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Consistent outcomes of interest are summarised below:

• Gender • Age• Severity of learning disability• Autism• Epilepsy • Mental Health Needs• Communication• Sensory Impairments• Residential setting

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•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

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•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

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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:

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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.

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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

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  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 illHistory of CBRecent worsening of CBCurrent circumstances resemble those at past high risk timesEtc…

Resilient:Fit; well; healthy; engaging in meaningful activity; achieving; no history of CB

  AdversityChallenging environment; burnt out family / carers (unable to cope); abuse; uncoordinated care; inappropriate peer group; disconnected from services; excluded from services; impoverished quality of life

 

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Any Questions?

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Building the Right Support and the National Service Model

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• 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

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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

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Transforming care and dynamic registers for people with autism and no learning disability

Sarah Jackson

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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

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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 WESTTotal population aged 18-64 predicted to have autistic spectrum disorders 43,178 42,949 42,657

NORTH EASTTotal population aged 18-64 predicted to have autistic spectrum disorders 15,699 15,463 15,278

YORKSHIRE AND HUMBERTotal population aged 18-64 predicted to have autistic spectrum disorders 33,025 33,088 33,163

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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

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People in

inpatient or

residentia

l schools

People at risk of admission

People known to services

Total people with a learning disability and/or autism

Identifying people with autism

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Any questions?

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Further questions and open discussion