1. Special Educational Needs and Disability (SEND) Reforms: towards Integrated working Nottinghamshire Pathfinder Project Team January 2014

2. The presentation aims to cover Experience of the Nottinghamshire pathfinder Reflections and learning that may be useful to voluntary sector colleagues

3. Case study: Why change? A more integrated approach will benefit children and families Worst month ever was Dec 2009 – 24 appointments in 17 days - etched on their memory forever! 35 services are currently involved, with six monthly reviews, some more often Attending 6-12 appointments a month (each can be up to ½ a day out of school) Attending 6-12 appointments a month (each can be up to ½ a day out of school) Over 50 services have supported her since she was born 11 year old girl and her family

4. Nottinghamshire’s Education, Health & Care Plan Pathway

5. Pathway Step 1: The Local offer Nottinghamshire are developing a multi media approach to information provision about services/ resources for use by families & services with:- an integrated website is now in place building on family services directory for all services to input and to access information. a mobile phone ‘app’ version is available access to face to face support through key working/ family supporters. Involvement of parents/ carers & other key stakeholders in development, updates and review.

6. Pathway Step 2: Referral Referrals are accepted from anyone……. parents young people professionals involved with the child or young person They are submitted to the Multi-agency/ integrated Hub The referral process seeks information about: parental responsibility the child or young person’s needs the reason for the request which services/agencies are already involved whether a CAF is already in place

7. Eligibility criteria for an Education, Health & Care plan in Nottinghamshire An integrated assessment & plan may be needed for a child/ young person with SEN & disabilities aged 0 to 25 with needs over & above those met at universal/targeted level, such as:- Severe/ complex long term needs affecting everyday life requiring provision & resources not normally available requiring intensive help & support from more than one agency making limited or no progress despite high levels of support are above statutory school age with evidence of a graduated response (appropriate interventions, support & resources, available through the Local Offer, have already been put in place.)

8. Timeline Stage 2 Referral Stage 4 My Plan 20 weeks maximum 4 weeks max 6 weeks max 2 weeks max 4 weeks max Decision Gather all information Multi Agency Meeting Proposed EHC Consult with parents Issue Final Allocate Resources and Budget Collect professional reports, ‘All about me’ Wiki pilot Prepare for MAM, Populate template Consider outcome of MAM and produce draft Amend and finalise Stage 3 My Story

9. SEND Hub All About Me Multi- Agency meeting Education All About Me Multi- Agency meeting Health All About Me Multi- Agency meeting Children’s Social Care All About Me Multi- Agency meeting Adult Social Care All About Me Multi- Agency meeting Voluntary & Community Sector Hub and spoke delivery model- linking services

10. Integrated Hub structure

11. An Integrated Hub Hub manager Hub Commissioners from Education Health Children’s social care Adult Social Care: Post 16: Plan coordinators: 3 teams covering North, central and south (District placement assessment team plus relevant others TBC)

12. Parent/ family involvement Parent Partnership Hub Parents working with central pathfinder team Detailed person centred case studies used to support training and illustrate need for change Voluntary sector involvement in development and implementation of pathway e.g. A Place To Call Our Own- APTCOO

13. Pathway Step 3- Gathering information for the plan: “My Story” Each family will be allocated a worker in the hub and spoke. Both have a role in developing the plan Hub: Plan coordinator to draw the plan together Spoke: Family supporter, identified in agreement with the family from one of the services closely involved, fulfilling key working responsibilities. They will know the family well & will help gather person centred information ‘All about me’ to support EHC planning

14. Step 4: Gather information for ‘My plan’ The ‘All about me’ information gathered by family supporter is shared at the multi agency meeting. This information includes: ① Relationship circle ② Working/ not working ③ Like and admire ④ One page profile. ⑤ What is important to maintain a child/ young person’s health, safety and wellbeing. Some children/ young people and families are also piloting a ‘Wiki’ which also holds this information

15. Making ‘My Story’ interactive

16. Background: Wiki Research with collaboration agreement in place with University of East London Easy-build web site platform (Klik In) being piloted to create personalised ‘wikis’with multi media technology to help tell a child/ young person’s story Multi perspective understanding quickly gained through photos, video, documents, text and web links Piloting ‘wikis’ with some children and young adults Evaluation will be undertaken across the control groups to inform our next steps Any services can access the ‘Wiki’ with family’s permission

17. Why a wiki supports integrated working... Reduce the times families explain their story Reflects a whole day and not just the part of it that most professionals are likely to see Shows simple techniques used to fit equipment or ways to help with activities or encourage independence e.g. positioning Shows all those supporting a child an insight into their life Useful source of family held information for all services providing care or support

22. Hannah Ruth (Mum) Paul (Dad) Lily (Twin Sister) Carin4Families- short breaks at home & overnight (Continuing Care) Rachel Gregory- QMC 0115 9249924 ext. 62738 Judith West (Teaching assistant) Bleby School 01656 830203 Dr Marder Paediatrician CDC 0115 8831156 Kate Sutton- Speech & Language Therapist) Stapleford Health Centre 0115 8835187 Kath Beastall- Keyworker Children's Disability Services Meadow House 01623 433675 Dilys Whitehead-Occupational Therapist Meadow House 01623 433077 Granny Beth Grandad Will GP 0115 9664120 Mobility Services- outdoor chair/ buggy Mr Marshall- ENT Audiology Ropewalk 0115 9485591 Miss Eastwood- Orthopaedics Great Ormond St. 0207 4059200 Mrs Tambe Opthalmology CDC 0115 8831156 Dr Thomas- Respiratory services QMC 0115 9249924 ext. 62395 Ash lea school/ hydrotherapy 0115 9892744 Orthotics/ physiotherapy Downs Syndrome Association Notts Downs Syndrome Speech Group New life (car seat) Jo Farquarson 0115 8831110 Physiotherapist-CDC John & Rachel (Uncle/ Aunt) Alicia, Richard George & Millie Family friends: Home adaptation Home Oxygen company – Air Liquide 0808 143 9993 Continence supplies Alex Holland 01623 433077 Educational Psychologist Fennel- Dog Cardiology Neurology Motability- Car HEALTH EDUCATIONSOCIAL CAREVOLUNTARY Bleby School 01656 830203 SEN services- educational statement Dentist 0115 9603572 Children & Adolescent Mental Health Services CAMHS Sensory services Chiropodist Inclusion support services Visual Impairment Team – Sue Newman 0115 8546024 Occupational Therapist 0115 8831101 PDSS Contract care-Short breaks away from home -awaiting a family placement Direct payments team Claire Godmother Karen, Steve Anna & Peter Village friends Kirsty- friend at school Nana & Grandpa (Dad's parents Live in London) School for Parents 0115 9586641 OTHERS RELATIONSHIP CIRCLE Children's Community Nurses (CCN'S) QMC Shelagh & family- School friends Hoist Company – Astor Bannerman 01242 820820

23. WORKINGNOT WORKING BUGGY: Buggy is really great & helps us get out and about.Will soon outgrow current buggy & readjustment is needed. BOOTS/ SPLINTS: B oots/ splints are fine. Understand ongoing arrangements for follow up/ ongoing support with Orthotics dept. The toes on left foot are overlapping, middle toe nail is growing in a ‘V’shape and is sharp and difficult to cut. MOVING AND HANDLING: Building work is underway on new downstairs extension (bedroom/ bathroom), which will help with moving and handling (no stairs to climb) and allow better facilities for short break support. Builder has recently been changed & progress is now being made. Extension work has been fraught with problems and delays. Home hoist has been playing up. A sling assessment is required when the hoist is functional (OT aware) Out family have never had moving and handling training. Transferring in & out of the car is becoming more challenging. This needs consideration when motability vehicle is changed, Car seat will soon need adjusting. SHORT BREAK SUPPORT: Carin4Families overnight short breaks very helpful, the staff are really fantastic and allow Mum to catch up on some much needed sleep. Assessment has been made for contract care (24 nights away from home a year) but no family yet identified 3 hour short breaks shifts don’t allow sufficient time to do anything really meaningful with sister, Lily. Hannah’s is easily disturbed at night. She does not always settle back to sleep if disturbed. She is always best left to sleep and only disturbed when absolutely necessary i.e. when responding to alarm, coughing or settling Hannah if distressed. Still waiting to find a family for ‘out of home’ short breaks on a regular basis, for the next few years. ENT ( Ear, nose and throat)Sleep apnoea continues. Date set for ENT review

24. WORKINGNOT WORKING DENTAL SUPPORT: Hannah goes to the family dentist H hates having her teeth brushed. We need to find the best ways protect her teeth? SUPPORT AT SCHOOL: Support at school is absolutely brilliant. Teaching Assistant Fabulous. It is difficult for Mum to work, due to taking to school late on many mornings. There is no ‘back up plan’ in place for days off school due to ill health, other than grandparents, if they are free. A long term solution would be useful. CLEANING: Cleaning help creates time for the family It would be great if short breaks service could help with small tasks in the home to support life at home e.g. ironing LE ISURE/ HOLIDAYS: Enjoy any opportunities to socialise as a family and love going away on holiday. H loves being entertained. She enjoys going out in her buggy on dog walks, playing with stickle bricks and swinging on her swing H has a keen sense of humour and fun. We would like to have a holiday away with friends, but due to high support needs we have not found a way to make this possible. ‘Ad hoc’ babysitting for both girls together is difficult to organise. We rely heavily on grandparents. This will get more difficult in the future. This excludes us from some of the social activities we would like to join in with. Finding leisure activities that we can take part in as a family can prove very challenging. There are probably leisure facilities that we do not know about. Any help / ideas would be welcomed. Finding leisure activities for to help H develop, learn and keep her body and mind active is challenging, especially in the school holidays. COMMUNICATION: H can communicate, if she spoken to clearly/ slowly, face to face and given time to process questions or instructions (see communication chart). The spoken word can be successfully backed up with the use of signing, pictures and Makaton symbols. It would be useful to explore if there any further communication aids that could be used at home. H sometimes grabs and pulls and this can sometimes hurt those looking after her. How do we manage this safely and understand what Holly is trying to tell us? It has been suggested there is a possible diagnosis of ‘Autistic Spectrum disorder’. This need to be considered further to ensure H is receiving the correct help and support to assist communication & learning

26. Pathway Step 5: An integrated budget There are a number of different options being tested, depending upon level of responsibility a family wishes to take. These include: Direct Payment Individual Service Fund Independent Third Party There will be a phased introduction. This will be supported by the Plan Coordinators and may require some independent support from a brokerage service.

27. Step 4 & 7: Multi-agency meetings/ Review Once ‘Like and admire’ & ‘what is working/ what could be improved’ are shared, outcomes are identified for the Education, Health and Care Plan. The actions required to achieve the outcomes are agreed, along with the budget. This is progressed at an initial facilitated Multi agency meeting, attended by key services involved Timescales for further reviews/ multi agency meetings are agreed as the EHC plan is put in place Many reviews have been run as person- centred meetings using a ‘working/ not working’ and other such approaches/ conversations.

28. Learning/ Reflections so far…….. Babies, children and young people with complex needs generally have very complex arrangements in place to support them. Working in a more streamlined/ integrated way is a challenge for all involved! Integrated teams may well develop to support the EHC pathway and process. Voluntary sector services need to be linked in. Person centred tools/ conversations have worked well with services in many different settings, including voluntary sector. Case studies are a useful & powerful resource to help make the case for change, demonstrating unique input of each service & showing where support could be more integrated or ‘joined up.’ Families/ young people who have tested the Wiki to date like to be empowered, holding and developing information themselves and choosing who they wish to share it with.

29. Thank you for your attention The end