The Future of Autism in Northamptonshire Round Table Discussion Minutes

Round Table Discussion & Panel

Kate Holt Trustee – Leads Panel

Bob Fletcher – commission manager for autism local authorities

Amy Hordley – Employment and Disability Service

Lorna Hape – Barrister

John Murray – Jogo Behaviour Support

Eileen Lane – Education – NCC

Proxy Questions


Q – what services will be provided for children with complex needs and challenging behaviour as not currently represented

A – BF – will confirm once in post as not got the say yet

JM – provision has suffered – a lot of cases are about need and vulnerability – but mostly around provision. Asks people to think about coordinating provision. The market place needs coordinating by the NCC.

Q – some parents have their own needs – is there any support for parents?

A – EL -advocacy service – named case workers – will fund independently – check answer????

Q – what ideas on adult and ageing autistic population in Northants

A – BF – adults largest group – no answers – sees roles as consulting with as many people to coordinate sevices. Said expert are in the room and will work with to

Lorna – the children and family act up to age 25 – lot to be done for older people. Feels strongly this area needs to be looked at for support. Lack of provision and options in the market place – needs to be a better understanding of needs and services.

Too many young people being told their isn’t any options.

People need to know up to 25 they are entitled to help under children and families act. If in Special provision – can include training – including independent living skills – skills for life and this needs to be remembered.

Audience member – have been told by NCC no help after school – but this is incorrect.

Audience – parents not getting the right information and advice – some parents are not getting any support. Kids are being left at 18 on their own – because people don’t realise its up to 25.

Audience feedback – 16-19 struggling – or being pushed on to courses that are not suitable.

John Murray – provision is a massive issue – and the coordination isn’t there to help meeting. Can sit in a meeting with 6 professionals and no central coodinating body in the county. There is duplication in some areas, and nothing in others and provision that doesn’t meet needs. Children in the county being let down.

Audience – after the programme – huge gulfs in provision where need bands are too restrictive. Huge gulfs of autistic children left with no provision.

Children with medical needs cant access services because of ratios.

No children feel safe and supported – no clear pathways.

Kate H – offered details of project through other company

Q – if someone doesn’t get diagnosis until 20’s – where does it leave.

A – Lorna – you don’t need a diagnosis to get help – EHG – and it doesn’t matter what age you start.

Not the case for for EHG diagnosis to access help.

Q – ECHP – hit a brick wall – with high functioning but violent – others agreed they were finding themselves being passed around.

A – Lorna – can be social, physical, metal etc – and don’t fit – other issues mean they would qualify. Misinformation from schools.

John Murray – pressures from schools and 6k budget – no coordination and misinformation. If school can meet educational needs – they should.

Schools are getting applications bounced back.

Lorna – applications for assessments – parents can do this as well as schools.

Q – Eileen – can you clarify children don’t need diagnosis – had to wait 2.5 years – now learning you don’t need it – told by NCC and letters told from office that cant apply for funding.

A – Eileen – confirmed you don’t need a diagnosis – as long as has special educational needs. Then they can make an assessment themselves and not just through schools – if school said no – in their professional opinion – you can bypass the schools.

Children are spending time out of school due to lack of advice. Too many layers to go through and then getting misinforamtion.

IAS service (used to be parent partnership) they will write on your behalf and help to get statuary assessment. No awareness throughout the process.

Q – IAS involved – now home education and now not sure what they can do.

A – Suport service within local authority and can provide specialist advice (check with Eileen) Cant provide therapy like cams

Intro – Jane Smith – Speciast support service – home educated

Can – behaviour – environment – sensory – self care – SUPPORT

Cant – provide education

Eileen – team for HOME ED – booklet available

Q – Schools –  do as much as they can – however schools are not informed – and only found out recently that you can access services without a diagnosis

Eileen – will take this back to NCC team – some schools have misinformation – Eileen said to disseminate through the sencos…

Been trying since 2014 and ended up home schooling and doing it herself. It went on for years. Wait times to long – all parents experiencing the same issues.

JM – schools misinterpreting information – they are told until they spend budget of 6 – every child has a price and no point applying for extra help until thats spent.

Its a money led system over a needs based system.

Lorna – Sencos dont understand the difference between NCC policy and law.

What schools should be doing.

Check with Lorna….

Bob Fletcher – info is available but not all to the people who need them. Competing services who don’t share information. This has got to be coordinated with all interested parties. Nothing is working – we can ask one person to make it work. How we make it work is about events and consultsation.

As a collective – we are not the only group receiving what we should do.

Only when things are challenged can changes be made.

Q – why is it so hard to apply for funding from council – letters are different and so much conflicting information.

Eileen – clarified that when statuary assemsnets required – addiotnal needs required to consider undertaking assessment

Sencos following procedures – waiting list for diagnosis – months to years.

Not aware where diagnosis affects assessment

Q – is there a minimum age for going on the list?

A – no –

Q – aware that depending on where you live – depends on what help you get.

A – not aware this is the case – but parents expeirteinces say otherwise

Q – gives info to schools where they don’t know – give to the senco – they cant say no when its there.

Q – do parents want a diagnosis? Bob

A – only if it helps – as parents experiences are feeling torn between pushing for diagnosis in order to get help

John Murray – again – everything needs coordinating – parents want to know that everything

Parents spend more time fighting rather than being a family

Q – needs for deaf and autistic child none available

A – centre in Birmingham – deaf cams

Q – nothing changed in 15 years apart from fighting for help. Never ending fight for help. Children are going to school – almost being tortured by their experiences. Schools are not coping.

Q – people not turning up for assessments – leading to family issues – downward spiral.

Support gets promised and nothing happens – what will happen to our children.

This is leading to bullying.

A – Bob – things are not working within the pathway –

Q – parents dont know where to go. More experiences for children. Childrens voices need hearing – we all need to learn together.

Kate Holt – please email all questions to Autism Concern and we will try and find the answers and we are essential to working together.

Q – can we have a forum?

A – Bob will set up a forum. Children’s voices need hearing. Kate will take this back.

Q – early years provider – everyone learning sign language – early years – very positive – then after primary – it all disappears in primary and secondary.

Q – is that a database so everyone knows? A simple system?

A – Bob – need a simple single resource – one website

Bob- I am interested in finding solutions and will nit make promises – but without making excuses – firm belief that money doesn’t solve anything. Too much money at the wrong targets. When their isn’t money – creativity takes over. Bob will listen and work with you – cant solve everything but will coordinate.

Kate Holt thanked everyone







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