Joint Autism Strategy SEND 2020 March 2016 Update

Joint Autism Strategy SEND 2020 March 2016 Update

Joint Autism Strategy SEND 2020 March 2016 Update Gabrielle Close, SEND 2020 Strategic Lead for Autism Website for todays resources: Contact: [email protected] Presentations will be on the website on Monday. The link will be emailed out on Monday too. Principles

Children and families at the heart of personalised planning Enabling Transparency Accessibility Expected outcomes and benefits of the Joint Autism Strategy Improve the experience and outcomes for Surrey children and families affected by autism Families will find it much easier to get information about what service are available to them and how to access them

Joint planning at the early stages will ensure effective partner working 0-25 and across agencies Existing resources can be used more effectively, avoiding duplication The workforce will have the appropriate skills and knowledge to support families at all stages of their journey Young people will receive the right support to prepare them for adulthood, independence and employment so that they can feel confident about their future Sponsor: Liz Mills, SEND 2020 Programme Strategic Lead

Joint Autism Strategy Lead Gabrielle Close Joint Autism Strategy Group Project Groups Oversees work-group progress. Forum for monitoring progress and problem solving, and key sign off point. Information for families Making it

easy to find whats available to families Local Offer, service websites and family friendly literature Common

Language/ Assessments Connecting and skilling the workforce Identify common assessment tools and shared

language across services, Produce a glossary Map services Gap analysis on knowledge & skills to respond to families at different stages of journey.

Draw up core training programme Preparation for adulthood Transition planning, pathways to employment, housing and being an active

member of the community . Autism and mental health CAMHS, early help and links to the new BEN pathway Progress to date An motivated and focused group formed across services and

age range Clearly stated intentions about what needs to be improved with a positive energy to bring about change Over 200 responses to survey for parents via Family Voice Surrey and NAS Surrey Focus groups for families around their experiences and to collate FAQs First meeting with local offer website designers autism pages act as pilot A forum for joint services planning of the new BEN pathway Joint statement on pathological demand avoidance First two PDA accredited training days to frontline staff

Next steps Listen and respond Publish an autism strategy within 12 months Make sure that planning leads to measurable improvements for families Continuously review services to ensure families get what they need Today... Speakers therapies, CAMHS, a family journey, a school perspective

Post-it notes for questions for pm and website Presentations on website Creating a new vision for Surrey CAMHS Mandy Dunn Co-Director, Children and Young Peoples services What we stand for

Service Model Diagram One Team What is Different ' CAMHS One Stop' - Referral & Information Centre for all referrals A no wrong door approach support to find the right help at the right time Lower threshold for CAMHS so more can receive support Expanded hours 8am-8pm Monday to Friday and 9-12 on Saturday

More accessible and user friendly through convenient locations and online services Automated clinical scheduling will ensure capacity, appointments and room availability is easier to manage Managed model of care with clear outcome monitoring after every session New services including Complex Behaviour, Improving Access to Psychological Therapies, and Adopted Children More demanding reporting on activities and outcomes for commissioners Continued work with CAMHS Youth Advisors and development of an employment pathway for young people Single Point of Access Beacon UK

CAMHS One Stop Referral and Information Centre Manage emergency / crisis, urgent and routine referrals and enquiries to the most appropriate team Operate an advice line for professionals who have a concern regarding children and young people Operate an advice and guidance line for parents, children and young people Provide access to 365 / 24 / 7 on-call consultant psychiatrist Manage web-based service directory that maps local provision for families in Surrey Support appropriate step-up and step-down to other services Signpost to the wellbeing and resilience services or other voluntary

sector partners using the service directory Building Wellbeing and Resilience Guided self help and support materials Primary mental health Children and young peoples Improving Access to Psychological Therapies Targeted Access to Mental Health Services for Schools Youth Support Service

Voluntary Sector Counselling Parental Support Programmes Targeted Services Primary Mental Health 3Cs Looked After Children (expanded) Adopted Children CAMHS Care Leavers (expanded) HOPE day service Sexual Trauma and Recovery Support (expanded) Parent and Infant Mental Health Service Behaviour Pathway for children with Neurodevelopmental Disorders

Specialist Services Community CAMHS Children and young peoples Learning Disabilities Eating Disorder Service Mindful 16-25 year olds (expanded) Crisis Support Services Extended HOPE Service 365 / 24 / 7 psychiatrist on call Paediatric liaison

Home treatment team for 16 - 18 year olds Extending the Crisis Cafe model for children and young people. Mobilising the new service model Go live date of 1 April 2016 Dedicated mobilisation team Visits to GP locality meetings, schools etc Workstreams with input from clinical staff, partners and representatives for children and young people:

Service delivery Single point of access Clinical

Workforce Information management, IT and governance Premises Finance Quality Communications & engagement Harrys Story Get in touch

email [email protected] Thank you Update on Therapies Spring Autism Conference March 18 2016 Zarah Lowe, Provision and Partnership Development Manager

[email protected] What does Commissioning Mean? The process of planning, agreeing and monitoring services What did you tell us? Speech, Language and Communication Needs A New Service from April 2017

Who will be providing the new speech, language and communication service? Early Years Health and Surrey County Councils Early Years Service Mainstream Settings Surrey County Council (based within Area Education Teams) Specialist Settings Host school in each area will be employing therapists who will be delivering speech and language therapy directly to

Special Schools and Specialist Centres in the area Benefits of the New Speech, Language and Communication Service Reduced waiting times Early intervention Increase in therapists

Specialist settings managing service directly New service for all school-aged children and young

people Therapists working as part of the school team Occupational Therapy New service specification from April 2017

Jointly commissioned Evidence based One countywide provider Outcome focused New key

performance indicators What will be included in the new Occupational Therapy Service? Clear pathways Easier access back into the service if child or young person has been seen previously Single point of contact KPIs focused on reducing waiting times Occupations focused not impairment focused

Occupational Therapy Sensory Issues in Autism Anna Richardson March 2016 Definition of Occupational Therapy Occupational Therapists assess and treat people using purposeful activity to prevent disability and develop independent

function. British Journal of OT (1989) 35 What do Occupational Therapists (OTs) do ? An Occupational Therapists Role Address difficulties in:

Self care Productivity Leisure 36 An Occupational Therapists Role Assess and support the childs ability to function: Self Care : feeding, dressing, toileting, personal hygiene

Productivity: Accessing the curriculum, exploration & investigation, design & making, physical development, creative development, behaviour & self control, writing. Leisure : play, sports, outings, daytrips 37 Occupational Therapy Physical access to the environment Functional Impairments

in ASD Deficits in Social Interaction Social Communication Imagination Sensory processing and emotional regulation These difficulties can lead to significant impairment in occupational performance across one or more areas of function Relevance of Sensory Processing and Autism

Children with Sensory Processing Dysfunction (SPD) have difficulty interpreting sensory information to make a motor, emotional or behavioural response The DSMV-IV states that children with ASD may have odd responses to sensory stimuli Relevance of Sensory Processing and Autism Research has shown that atypical sensory processing is a central aspect of ASD Sensory processing difficulties are more

common in children with ASD SPD without ASD = 5% to 16% (Bialer & Miller, 2011) SPD with ASD = 30%-80% (Baranek, 1997; Gillberg, 1990; Kientz & Dunn, 1997) Sensory processing difficulties reflect the pathology of Autism but are not the cause Relationship between ASD & SPD SPD

ASD SPD ASD SPD ASD Sensation is everywhere The way that we experience sensation is

unique We experience life through our senses The world is a sensory place Sensation is fuel that makes the brain work The brain needs sensory information to function Each of us needs a different amount of sensory input to operate best Sensory Processing

The ability to register, discriminate, adapt and respond appropriately, both physically and emotionally to sensory input from the environment. Sensory Processing 1. The body receives sensation 2. The brain works out what it is 3. Message sent to respond Our Senses Tactile

Receptors in skin & mouth. Registering light touch & deep pressure. Responses to shape, size, texture, temp Gustatory Taste (salty, spicy, bitter, sweet)

Auditory Receptors in ears. Important for survival. Gives information about space. Monitors and interprets sounds to support interaction & engagement Vestibular

Receptors in inner ear give information about position and movement in relation to gravity. Gives the me point in space Visual Monitoring our environment. Seeing in terms of brightness,

shapes, interpretation Proprioception Olfactory Smells (pleasant, unpleasant, dangerous) Introception Receptors in joint and

muscle sensation (pressure and force). Gives us a body map Sensation originating in the body; the physiological feelings of the body parts (pain, temp, itch, hunger, thirst, stomach ache) Human Skills & Behaviours Orienting response opens the gateway to:

Safety Priming sensory engagement Mother infant bond social interaction Exploration - mobility away from and towards

environment & objects Play Motivation & reward from the social group Executive function - copy, problem solve, predict the future Learning new skills Human Skills & Behaviours Defensive response narrows focus, shuts down the above areas in response to threat

Real Perceived Significantly impacts all areas of function Arousal levels High Just Right Low 10:00am

Noon 3:00 5:30 10:00pm Balance of safety Vs threat Wheatley-Crosbie, adapted from Porges, 2006 Environment: outside & inside the body Nervous System

Safety Optimal arousal level Rest & digest Parasympathetic ventral vagal system Social Engagement System Eye contact, facial expression, vocalization Danger Hyperarousal

Increased Heart Rate Sympathetic System Mobilization: - Fight-Flight Dissociated rage, panic Life threat Hypoarousal Decreased Heart Rate Parasympathetic dorsal vagal system Immobilization:

- Freeze Dissociated collapse Sensory processing and Regulation A well regulated nervous system can organise and prioritise incoming sensory input to focus on relevant and ignore irrelevant. Arousal and attention appropriate to task Emotional Regulation

Self regulation is the ability to change your arousal level to match the task Mutual regulation is the ability to seek and accept assistance from others to regulate ones arousal Sensory input can change/regulate arousal level Language key factor in self regulation Emotional Regulation Children with social communication difficulties can have difficulty regulating

their arousal and emotions. This can impact on a childs ability to cope, make transitions and actively engage with others. Emotional Regulation May lead to unconventional coping strategies

Mouthing Hoarding Rocking Hand flapping Turning away Removing oneself from a distressing situation Rigidity Sensory processing

dysfunction Oversensitive Under responsive Fluctuating responses Sensory Over-responsivity Brain registers sensation too intensely Respond too quickly or too much to small amounts of stimuli Fight, fright, flight behaviours Emotionally charged behaviours High arousal levels constant state of

high alert Behaviours depend on sensory systems involved Sensory Over-Responsivity High levels of anxiety May go into shut down Resulting in problems in behaviour, motor function, self-care, socialisation and routines. Can be referred to as sensory defensive Evidence that sympathetic nervous system differs significantly from typically developing.

Sensory Over-responsivity: Behaviours Behaviours related to anxiety, fear, mistrust, anger and aggression. Their world is aimed at self-protection Most common symptoms are heightened tactile and auditory sensitivities which often co-occur

ASD: 19% hypersensitive to sensation The most important action with sensory sensitivity is to: Identify the difficulty Remove the cause of the difficulty where possible Warn/prepare the child about what will happen (e.g. before the bell, when about to be touched) Lessen the intensity of the sensory input (e.g. wear headphones, lower voice)

Let them withdraw (e.g. safe spaces, use of tools instead of fingers in sand) Let them engage in calming activities when faced with stressful situations (e.g. fidget toy, deep pressure) Gradually increase their tolerance levels These children do not get the sensory Sensory Under-responsivity information they need and often do not seek it

for themselves Often described as zoned out Have difficulty responding to what is going on in their environment & often appear lethargic or flitting around Can be linked to poor awareness of space Under-responsive Passive/daydreamer Require larger quantities of stimulation for a longer and greater

intensity to register it Low tone Poor body scheme Poor awareness of position in space ASD: 39% under-sensitive to sensation In supporting these children the general principles are to use sensory strategies to wake up their brain so they are better able to engage. This involves:

Regular sensory stimulation built into their day typically intense touch, movement and/or deep pressure activities warm up activities before focused work Increasing awareness of space When functional difficulties are present what can be done about it? Occupational Therapy Aims of Occupational Therapy with children with ASD

Support attention and engagement and interaction through emotional regulation Promote development of motor skills for functional tasks Increase independence in self help skills Occupational Therapy Therapy to improve emotional regulation and support attention, engagement and interaction

Motivating sensory activities Environmental adaptation & equipment Build relationships & functional motor performance Primal play

Individualised motor programmes Visual supports Modelling Preparing for change How can you help your child

Recognise the reason for the problem Read the signs-detective work Use calming and alerting strategies Control environment Never think of sensory in isolation of other strategies to support regulation Calming Sensory Strategies Squash under pillows Wheelbarrow walking over a ball

Deep pressure massage Bear hug Sucking/ blowing activities Squeeze against gym ball/roll gym ball over over child Walk with back pack on Help move furniture Heavy work regularly through the day Sensory equipment to calm or alert

Miracle belt Move n sit cushion Weighted lap toys Bear hug Fidget toy Chewy Tube Chewllery

Strategies for common problems: Dressing Consider fabrics. Try washing several times before wearing (unscented products) If intolerant of labels, cut out Wear undergarments Be aware of noises in room when dressing Strategies for common problems Personal hygiene/grooming Minimise noise in bathroom (eg run water before)

Where possible have child do task them self Use firm touch, avoid light touch. Approach from front Hand held shower Electric toothbrush Use deep pressure touch as preparation egdeep pressure to nails for cuts Strategies for common problems Personal hygiene/grooming Hold child firmly and squeeze between your knees (deep pressure) Hands on head and press firmly down

before haircuts Give clear time limit to tasks Helpful hints: Feeding Meals should be at table Reduce distractions (no TV) (dishes/utensils) Include other family members/peers at meals Meal and snack schedules Use organising sensory activities before mealtimes as part of mealtime routine

Sensory activities before meals Heavy work activities (e.g. wheelbarrow walking over ball, pushing/pulling). Use oral motor Quickshift prior to meal times Deep pressure touch (e.g., bear hugs, massage, rolling ball firmly over child) Sucking and blowing games (e.g. Blow toys, blow bubbles, blow cotton balls etc through straw)

Helpful hints: Sleeping Encourage physical activities during day, particularly heavy work and movement activities. Avoid/limit day time naps Avoid stimulating activities 1-2 hours before bedtime (eg. rough play, TV, computer games) Avoid food drink with caffeine (eg chocolate, cola) Use regulation 1 or 2 Quickshift during bedtime

routine Ensure child not hungry Helpful hints: Sleeping Set bedtime (somewhat flexible) Bedtime about same time during weekends Use calming sensory based activities as pre bedtime routine Squashing under ball Massage Story

Soft music Weighted blankets may be helpful for some. Limit distractions Helpful hints: Busy environments Additional planning (eg. quick exit, quiet place, when to go, special toy) Use heavy work activities (e. Carrying back pack, pushing trolley) Chewing Bearhugs/weighted equipment

Consider earphones with calming music (quickshifts) Things in the environment that often help Routines Visual supports (e.g. visual timetables)

An enclosed chill out space Helpful equipment: trampoline, space hopper, gym ball, swing Therapeutic Listening app Quickshifts 79 Sensory diet cards- from

80 Useful Websites Resources: Some helpful books

Miller. L.J. (2006). Sensational kids. Hope and help for children with Sensory Processing Disorder. Penguin group. USA. Ayres, J. (2005) Sensory Integration and the child. Understanding hidden sensory challenges. Western Psychological services. USA. Yack, E; Aquilla, P et al.(2002). Building bridges through sensory integration. Future Horizons. Texas. Godwin Emmos, P; McKendry Anderson, L. (2005). Understanding sensory dysfunction. Jessica Kingsley Publishers. London. Chara, K; Chara,P. Sensory Smarts.(2004) Jessica Kingsley Publishers. London.

Some helpful books Smith Myles, B; Tapscott Cook, K et al. (2000). Asperger Syndrome and Sensory Issues. Autism Asperger Publishing Co, Kansas. Ernspergers, L; Stegen-Hanson, T. (2004). Just take a bite. Easy, effective answers to food aversions and eating challenges. Future Horizons, Texas. References

Dunn, W. (2008). Living sensationally. Understanding your senses. Jessica Kingsley Publishers. London. Beath, L; Park,L. Making sense of sensory behaviours. Falkirk council Social work services. Bundy, A; Lane, S; Murray, E. (2002).Sensory Integration: Theory and Practice. 2nd ed. Philadelphia: FA Davis. Shellenberger, S; Williams, M. (1996). How does your engine run? A leaders guide to the Alert Programme for self regulation. Therapy works, Inc. Murray-Slutsky, C; Paris, B.(2005). Is it sensory or is it behaviour? Psych Corp, USA.

References Bailer D, Miller LJ. No Longer a Secret. Sensory World, Future Horizons; 2011 Greenspan, S., and Wieder, S. (1998). The Child with Special Needs: Encouraging Intellectual and Emotional Growth. Reading, Mass: Addison-Wesley Mostofsky, S. H., Burgess, M. P., & Gidley Larson, J. C. (2007). Increased motor cortex white matter volume predicts motor impairment in autism. Brain, 130, 21172122. Miller LJ. Sensational Kids: Hope and Help for Children with Sensory Processing Disorder. New York, NY: Penguin Group; 2006 Miller, L. J., Anzalone, M. E., Lane, S. J., Cermak., S. A. and Osten. E.

T. 2007. Concept evolution in sensory integration: a proposed nosology for diagnosis. American Journal of Occupational Therapy. 61(2), pp. 135-140 OHearn, K., Asato, M., Ordaz, S. & Luna B. (1998). Neurodevelopment and executive function in autism. Developmental Psychology. 20(4):1103-32. Discussion and questions 8 6

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