1. Education Health and Care Plans and Outcomes

2. 18 month research project funded by National Institute of Health Research Led by academics at Peninsula Cerebra Research Unit: University of Leeds, University of Exeter, University of York Final report and summary reports published June 2014 Overall aims of CHUMS: What outcomes of NHS care should be measured for children and young people with neurodisability using Patient Reported Outcome Measures (PROMS)? What should neurodiasbled children, young people and their parents want from from the combined resources of the NHS; and how can this be measured? Children’s oUtcomes Measurement Study (CHUMS)

3. What we did CDC carried out qualitative research with neurodisabled children and young people (54) and their parents (53). In this research we addressed the following questions: What health outcomes matter most to neurodisabled children, young people and their parents - based on WHO ICF If existing PROMs are suitable for use with children with neurodisability and address the priorities and concerns of children/parents To consider pragmatic approaches which might motivate children to want, and be able, to complete PROM questionnaires, such as novel technology.

4. Response to the measurement tools 4

5. 5 F1And then you’d actually want to go away and commit suicide, wouldn't you, when you realise […] That you have trouble getting along with the world, you have other kids who don’t want to be with you. […] I don’t want Matthew to say yes to that. […] I don’t want them to be even, have that in their head. F2I feel afraid and scared, I feel sad or blue, I feel angry, I have trouble sleeping F1I worry about what will happen to me, I have trouble getting along with kids, other kids don’t want to be my, my God. […] F2They’re all really negative, aren’t they? (FGP3)

6. Our findings about outcomes For both parents and CYP our analysis found: Relationship between outcomes: how different outcomes areas inter relate to form broader concepts and life outcome areas Hierarchy of outcomes: “high level life outcomes” at top, dependent combinations of lower level outcomes. Meaning of outcomes: Individual outcomes have complex set of meaning for parents and children There are similarities and differences between the parents and children

7. Outcome hierarchy parents

8. Outcome Hierarchy: children & young people

11. Vital health commissioners and providers understand their contribution to young people’s life outcomes Aspect of healthN Pain118 Communication80 Movement (in Body Structures): e.g. Reduce/prevent contractures and deformity; muscle length and joint range of movement60 Neuromusculoskeletal and movement-related functions: Improve gross and fine motor function; improve quality of movement57 Self care: e.g. Improve independence in all activities of daily living (washing, toileting, dressing, eating)51 Functions related to digestive system: e.g. Constipation, swallowing, drooling50 Changing and maintaining body position: e.g. Sitting, standing, lying down49 Mobility (in Activity and Participation): e.g. Improve transfer45 Body function: e.g. Improve function, functional abilities (very general)39 Muscle tone function: e.g. Spasticity39 Sleep functions37 Psychomotor control: e.g. Manage behavioural problems32 Consciousness functions e.g. Seizure, stroke30 Mobility of joint functions: e.g. Improve mobility and ease of movement of joints29 Learning and applying knowledge: Acquiring skills; learning to read, write28 Acquiring basic skills: e.g. Learning to coordinate fine motor function to improve eating, pencil holding28 Control of voluntary movement functions: e.g. Coordination of movements, improve head and trunk control25 Muscle power functions: Muscle strength24 Activity and participation22 Community, social & civil life: e.g. Engage in social clubs; recreation and leisure21 Temperament and personality functions: Confidence, emotional stability21 Mental functions: e.g. Improve mental health issues; reduce emotional and behavioural difficulties20 Specific mental functions: e.g. Anxiety, attention20

12. Outcomes and the Education Health and Care Plan

13. Outcomes are at the core of the children and Families Act: Section 19 Principles. Local Authority and partners must work together support children and young people to “achieve the best possible educational and other outcomes.” Must include voices of children and young people with SEND and their families Local authorities and CCG’s will have to agree how to achieve the outcomes for children and young people with SEND. Outcomes in the Children and Families Act

14. Goal of EHC Plans is to improve outcomes for children and young people with Special Educational Needs The aspirations that children, young people and their parents want must be included in EHC plans Aspiration: child or young persons goals for the future. Should change as they get older and consider their aspirations for paid employment, independent living and community participation. Provision to meet needs and achieve outcomes: Provision must be detailed and specific and should normally be quantified Education Health and Care Plans

15. Focus on education, health and care outcomes that will enable progress Distinction between aspirations and outcomes ‘A benefit or difference made to an individual as a result of an intervention’ Personal and ‘not expressed from a service perspective’ and not a description of a service being provided What needs to be achieved by end of a phase or stage Requires person centred practice and cultural change – joint working and post 16 participation Delivering best possible educational and other outcomes

16. Outcomes: are the benefit or difference made to an individual as a result of an intervention. Must be specific, measurable, achievable, realistic and time bound (SMART). Outcomes are not a description of the service being provided What needs to be achieved by end of a phase or stage Personal and not expressed from a service perspective Must move towards preparation for adulthood Outcomes in EHC Plans

18. Outcomes Development Cycle Agreeing outcomes & provision Delivery and review Assessment and evidence Agreeing aspirations AssessPlan DoReview

19. Share your local area’s EHC Planning Process: Identification what processes are in place to ensure children and young people are identified, particularly in the early years. How should this notification be made How is the decision to undertake an EHC needs assessment made? What evidence is required and how is it gathered? Who is informed and when? Person centred conversation – who is involved? How is the conversation conveyed to professionals who aren’t in the room? EHC Planning Process – Group work

20. Share your local area’s EHC Planning Process: Multiagency assessment of need informed by aspirations from person centred conversation How do you ensure that the aspirations of the children and young people and their family influence assessment and evidence gathering? Are new assessments of need carried out? And if so what is the process for this? What is your process for bringing together information and advice with aspirations to form SMART outcomes How is the information from the assessments brought together? Who is involved and how is the family kept involved? What is your process for agreeing and specifying provision to support progress towards those outcomes? EHC Planning Process – Group work