Working Together for Change Dudley Parent Carer Forum

EHCP Task & Finish group

(First session)CCG Building, Venture Way, Brierley HillJune 2016

Attendees

Tim Horsburgh Nicki BurrowsAlex BurnsSue PowellRebecca DingleyLinda CrocketAnne DaviesJessica TinsleyMartin TimminsAlex Burns Donna RobertsLinda CropperSharon Hearne Dawn Goodall Diana Martin Victoria Townsend Gill Caldicott Sally Waldron Tina CartwrightLynn PassJackie Hemmings

ApologiesMelanie GriffithsJanine KeppyJane walkerCarrie BythewayAmanda BakerRashmi CareyIona Payne

Tim Horsburgh from Dudley Clinical Commissioning group opened the meeting and welcomed everyone. Tim talked to parents about his role as the designated medical officer (see presentation). His role is particular challenging as there is limited time dedicated, lack of resources, and decision making structure in place which makes this role hard to achieve its maximum potential.

Tim shared his opinion that feedback from Groups such as the forum are essential to further develop the work and to identifying gaps.

Q: Do you collect data in your role about the type of disability and how are you using this data?

Tim explained that yes they do collect data on approximately 280 children with complex needs in the borough. He did explain however that this could be improved on and that it is something they are currently looking into particularly with national datasets.

Colleges commented that educational settings can meet needs better if we have this kind of data. It should be used to inform provision from birth right through to end of life and enable services to plan better.

Tina commented “I don’t see how you can do this job well with only being able to allocate one session a week” The forum asked who they could petition to increase capacity? Tim agreed that one session was very frantic and only allowed an overview perspective. He also explained that his time is taken up with looking at individual issues. This is a major gap for Tim and Linda which they have been looking into for a while, Tim explained that it is what we have, that he doesn’t think it’s adequate and that he, like many, others feel that the Children’s agenda is are overlooked. Nicki explained that as a forum if this is a priority it can be raised at the SEN Reform Board meeting.

Q: Are children picked up through the disability register? Tim and Linda explained that some will be but also other will be identified from birth or through hospital, or possibly through education.

Tim unfortunately had to leave the meeting at this point but is very much looking forward to progressing this work with the forum.

Set the Scene:

Nicki shared some example of the excellent work the forum had been involved in and the range of tangible recommendations that they had influenced which have improve lives of children and young people with SEND and their families. She explained how the forum feeds into SEN Reform Board and that EHCP was one area of concern raised not only by parents but by professionals too, we are all working together to iron out and address issues and find joint solutions.

Guidelines and rule of engagement were shared by Tina and it was made clear that all parties round the table must adhere to them.

Parents started to share how they felt and explained that an EHCP for them is a statement of reassurance. They also felt that some of the new ones have gone very smoothly and that it is more complex at transition stage.

Donna shared the findings of two surveys done through the SEND team and appreciative interviews done with six parent carers (see attached report).

Rebecca explained that “Parents aren’t made aware of what needs to happen, what needs to go in, you are given a document you have no idea how to fill it out. It is a postcode lottery.”

Alex felt that “there was a lack of information at correct time due to lack of diversity of medical reports. There is plenty of Education but no Health or Care!”

Linda explained that Tim has picked this up and a letter has gone out to paediatricians to explain their responsibility. Similar discussions will take place with therapy services and CDT team.Victoria felt that what parents were discussing was the post 19 or post 16 transfer process moving to transition. This transfer process will take us through to 2018.

Sharon Hearne explained the EHCP Process Pathway.

She explained that 20 weeks seems a long time but there are lots of steps to get us there.

Week 1 - referral comes in and the team send a letter explaining that they are considering the request.

Week 2/3 – A letter is sent to multiple agencies and colleagues and the paperwork goes to panel.

Week 3/4 - A decision is made, if it is yes we will do an assessment or if no we explain why we are not making an assessment. If yes, we ask referral panel if they want to update their information. All information at referral stage should be up to date so it doesn’t hold things up at a later stage, but this is not always the case, which is why we offer this opportunity.

Week 6–A pro-former is produced at this point that tells us through discussions with parents, young person and professionals their needs, aspirations, provision, outcomes and monitoring which all goes into EHCP. The information in the document is only as good as the information you receive. This along with waiting lists; referral process, etc can make this longer than 20 weeks.Sometimes the front loaded information (pre week 1) isn’t in a format that is helpful and does not demonstrate clearly the need for provision and outcome.

We are working on ‘Advice for Advice Givers’ project. Dawn Goodall’s team have totally revamped their procedures to feed into the EHCP. There are other professionals we need to work with. Everyone needs to understand the structure of the EHCP, how their roles fit in and the fact that it is prescribed by the Government.

Alex asked “What if you have a 19 year old that has never had an EHCP? Services stop at 18 – how can you collect this information?”

Sharon agreed that it is frustrating the services finish at 16 or 18 and because there is no clear pathway it is difficult and something we need to look at. We need to look at the pathway 0-25 and understand it. EHCP is education driven so if there is no education needs, they will not receive an EHCP.

Week 6-12 – If yes, the process continues. If no a reason is given and the offer of a meeting or details of the appeal process is given. This is why the letters are so complex because the legal bits need to be included.http://www.dudley.gov.uk/EasysiteWeb/getresource.axd?AssetID=280157&type=full&servicetype=Attachment.http://webcache.googleusercontent.com/search?q=cache:raJGrAVFwIQJ:www.dudley.gov.uk/EasySiteWeb/GatewayLink.aspx%3FalId%3D264326+&cd=1&hl=en&ct=clnk&gl=uk

Week 12 – information goes to panel with all different parties’ input, this is a decision point where it is decided if a plan will be allocated. There are lots of opportunities to talk at this point. Health Watch can help if you are struggling with health and social care elements.

Rebecca commented that “Some parents have had incomplete information on their EHCP and they have refused to sign it off and still have had the EHCP turn up on their door saying its complete – this is scary for parents.”

It’s a fine balance between meeting to 20 week deliverance and having a complete document.It was agreed that there has been a lot of learning from the mutual cohort that went through this process.

Things need to happen early and Sharon has been working with Connexions & colleges to look at how far back that the work needs to start to meet the 20 week deadline.

Q: Does a SENCO representation need to attend this meeting?

Nicki explained that schools were invited at the strategic group meeting there is a need to nominate someone. Marie Hunter from Pens Meadow School will be attending these meetings but unfortunately had to send her apologies for today’s meeting.

A question was asked about parent referrals. Sharon explained that it is really difficult if a referral comes in from parents because there is no information available from parent to help make a decision. In reality if schools are dealing with the review properly, there should be no need for parents to ask for a referral.

Guidance has been sent to main stream schools from the SEN team so we are working with schools a full term ahead and a system is now in place. Parents felt that a Mainstream schools representative is needed at this group.

Week 16 – draft plan is produced and circulated to colleagues and presented to parents who have 15 days to tweak the plan and state their preference.

Sharon explained again that they don’t always meet the 20 week deadline. Nicki explained that parents have told us that they would prefer not to meet the deadline but to get it right.

What causes delay…?• Poor paperwork• Inadequate reports• Volume of work• Complexity of case work• Extended discussions at draft• Colleagues unable to attend meetings in a formal manner• Late responses to consultations• Extended discussion with settings• Funding agreements• Working with families• Exceptions (ie 6 week holidays)

Jessica asked “where EHCP are in place do you still do a year review and what are the timescales?”

Sharon explained that there is a statutory requirement to review the plan yearly, they are working on a schedule to balance between personal review & capacity to keep document updated.

Anne “With a primary school pupil in yr6 with an EHCP through the annual review would the secondary school be named?”Sharon explained that we have a process and have asked schools to make parents aware. Year 6 transition EHCP needs to start on the 15 February. Anne stated “but you don’t know what school you have then?” You have to state your preference and get an amended version.

Key areas of challenge?

Colleges felt that getting a plan in a setting doesn’t give you an idea of the young person because they are often different to what’s on paper – you don’t get a full picture of what the young people are like. It’s hard to meet sometimes comment on the EHCP within the 15 day timeframe.

When specialist services stop at 16 needs are written in the plan so that the colleges can try to commission these services but they are really difficult to find and put in place. There is a lack of services available. Professionals agreed that specialist services are a Black Country wide issue. It’s a challenge to commission these services such as Speech and Language Therapy.

Linda stated that she did not understand .If a health need is identified in the EHCP it is a duty for the CCG to commission these services. The CCG commission post 16 services from Dudley Group. Linda is already looking into the gaps.

Alex asked “Who is responsible for ensuring Health and social care are responding?”Linda felt the CCG should for health and Donna Patel should for social care.

GPs need to take more responsibility at post 16 and parents should be informed and signposted to adult services.

Alex asked a question around therapists within schools and DBS checks. The employer ‘Black Country Partnership’ does not share staff DBS checks as this is personal information. Linda will pick this up outside the meeting.

Everyone agreed that it would be productive to meet before the schools break for the summer to move this work forward and gain momentum.

It was also felt that it had been a very positive meeting that had helped parents to understand the process; however it needs more social care professionals around the table. The question was asked if it would be beneficial to ask adult Commissioners to attend to cover up to 25 years. This has been raised with Neill Bucktin.

Victoria suggested that there may be benefit in developing a number of case studies in post 16 – post 19 settings

Date of Next Meeting Thursday 29th September at 9.30 – 11.30am at CCG Venture way.