Chair, fellow councillors and colleagues I am moving the motion to support the adoption of a lifelong strategy for people with Autism Spectrum Disorders and (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) to ensure that SCC meets its duties in a fair and transparent manner.
Autistic Spectrum Disorders (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) affect at least 3 in every hundred people and that’s a conservative estimate. In real terms in Suffolk that means around 22,000 people with specific but varying needs depending on the individual. I’m sure you all have some idea about these conditions but I’d just like to ensure that we all have the same understanding.
ASD is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but many others may have accompanying learning disabilities and need a lifetime of specialist support. People with ASD may also experience over-or-under-sensitivity to sounds, touch, tastes, smells, light or colours.
Asperger Syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.
Many currently go on to face Mental Health conditions through inappropriate or inadequate support.
Attention deficit hyperactivity disorder (ADHD) is a group of behavioural symptoms that include inattentiveness, hyperactivity and impulsiveness. Attention deficit disorder (ADD) is a sub-type of ADHD.
Common symptoms of ADHD include:
• a short attention span
• restlessness or constant fidgeting
• being easily distracted
ADHD can occur in people of any intellectual ability. However, many people with ADHD also have learning difficulties. They may also have additional problems such as sleep disorders, mental health issues and significant issues with relationships and anxiety.
Often ASD and ADHD go hand in hand.
Many young people on the spectrum and with ADHD are deemed to have ‘behavioual problems’ and time and time again are excluded from mainstream schools, particularly high schools within a relatively short time of transition from primary or from middle where there is still a three tier system in place. These young people are being let down by the council as they need an early and proper diagnosis and the proper support to themselves and their families within Suffolk which frequently as acknowledged by Graham Newman in February this year. In his letter to Terese Coffey about Educational Provision for Children with High Functioning Autism and Asperger Syndrome on 27th February he acknowledges that the County Inclusive Resource which supports children in mainstream schools cannot support them all. He states that, ‘some children do need alternative specialist provision and currently there is no such provision in Suffolk.’
The National Autistic Society which recognises the good practice of the County Inclusive Resource is potentially interested in opening a school in Haverhill in Suffolk for children for whom mainstream is not an option. We welcome and support this possibility but have concerns that the data held about the numbers of children and proper diagnosis may not be sufficient to make the case. Whilst the Special Educational Needs audit should identify children with ASD and ADHD and other specialist needs often children do not get them in a timely fashion. And as there is no provision for diagnosis within Suffolk between the ages of 8 and 13 again families put on waiting lists and have to travel out of county to get the proper diagnosis they need.
Many, many parents resort to demanding a ‘statement’ for their child. Whilst the paper to Scrutiny in January states that a statement carries no additional resource per se, it will trigger an SEN Audit with which comes the additional resources where needed. Many parents are further forced to take the council to tribunals to ensure their children get what they are entitled to. Many times these do not reach the tribunal and are finally resolved days before the tribunal would have taken place. But again this is a hugely distressing and disheartening process for the families who have to go through it. And it costs them and the tax payer a great deal to cover legal costs, fund which would be better spent on education, health or social care.
I’m pleased that there is now a group set up to look at ASD in particular from 0 to 25 with an integrated approach from health, education and social care. I’m sure that this group will be able to adopt a far reaching and effective strategy to deal with young people up to the age of 25 as long as it is properly resourced and the people involved in delivery are not just ‘gatekeepers’ but understand the needs of the child, young person and family. But it is hugely important that there is a smooth transition from age 25 for the rest of the person’s life to ensure independence and dignity. It is also very important that all council employees and partner organisations are made much more aware of these conditions if people are to be enabled to fully take part in society in Suffolk.
There are many success stories in schools and colleges throughout Suffolk. Some of the results at Parkside are truly amazing but SCC has never asked them to share good practice. Many of the students at Suffolk New College with such a diagnosis have made huge progress when they had the right support, help and encouragement, with this current cohort reciving a 99% success rate with support received throughout the college from We Have a Voice. These experts should be asked to join the group for 0 to 25 to give professional input but again Schools across the county should be encouraged to engage with the resources they provide. Norwich City College has specialist provision but again this is a long way to travel and very difficult for many young people on the spectrum to even contemplate.
There is currently a huge backlog in processing the ‘statements’ which have been prepared by the Specialist Educational Needs Co-ordinators in schools for the pupils with additional needs. Parents who contact the council are being told, a week before the end of term that they don’t know when they will hear about their child’s case despite paperwork being submitted 6 months ago. Thus families face going into the summer holidays not knowing whether their child will be getting the additional support the SENCO thinks necessary and the schools being unable to plan for September. This must have a knock on effect to educational attainment and if dealt with quickly and effectively would not be contributing to our standing in the national league tables.
For adults there is a greater problem if they have not already had a diagnosis as SCC does not fund diagnosis post 16. For these people, many of whom have not been able to get jobs due to their inability to relate to people or think laterally Suffolk is not a good place to live. Nationally the unemployment figure for this client group stands at 85%. Housing provision in Suffolk for people with spectrum disorders is woefully inadequate, obtaining social care and benefits is complicated without support and if there has been no diagnosis then ATOS simply declare them ‘fit for work’ regardless. Pathways into jobs for adults with spectrum disorders are not easily accessible and although Papworth and Shaw provide some assistance they have crazy targets on the work programme which don’t help people who require time and patience. The introduction of Universal Credit in its current format is going to create massive issues as environments they need to access are currently barriers in themselves, meaning sanctions on their payments will quickly follow creating even more distress and possible housing issues.
Some progressive employers such as ISG Jackson have engaged supporting organisations such as Autism and ADHD Business and Employment project to assist with employees who have ASD or ADHD which keeps them in work and feeling like an important part of the social fabric. Sadly this does not represent the majority and much work needs to be done by SCC and partner organisations to change opinions and offer support where it is needed. These ground breaking organisations exist in Suffolk, but are finding it extremely challenging to get SCC staff to engage with them on these issues, even though there would be little or no cost involved for SCC themselves. This needs to change.
I hope that you all feel that you are able to support the motion, ensure that we have a comprehensive and far reaching strategy for all the citizens of Suffolk and a county where people with Autistic Spectrum Disorders and Attention Deficit Hyperactivity Disorder feel truly part of society.