Sussex parents "struggle" to cope with children with autism

Sussex parents face a "huge struggle" to cope with children with autism, a local meeting heard last week.

Parents spoke of the difficulties they faced at a special 'summit' convened by Arundel & South Downs MP Nick Herbert to discuss autism care provision in Sussex.   

But they were told that new Government plans to co-ordinate local services better would improve support in future.

Mr Herbert called the meeting at Arundel Town Hall for families to meet council representatives, care providers and charities after hearing from local parents with autistic children about the problems they encountered.

The MP worked with Autism Sussex and the National Autistic Society to bring together representatives from West Sussex County Council, the NHS and Sussex NHS Partnership Trust to speak and listen to parents' concerns.

Henfield parent Victoria Thompson, an Ambassador for National Autistic Society, set out the issues facing families with children affected by autism.  She spoke of how parents often had to fight to obtain a diagnosis of autism, with some medical professionals negating parents' valid concerns.  This was just the beginning of a long battle to obtain a special educational needs statement and to get the appropriate education for their children.

Ms Thompson described the lack of co-ordination of services from the local education authority and the health service and other sources of support.  There was also a clear lack of information about the services available and parents were often in the dark about just what was available to them.  She suggested that the various agencies could pool their resources and establish a directory of services which would be available in print and online.

Ms Thompson also talked about how the transition between child and adult services was fraught with difficulties as the communication between the service providers was very often poor, and parents worried about what would happen to their children when they were gone.  Other parents echoed these concerns, particularly those with adult children who were left to fend for themselves and had very little by way of support.

Many of the parents spoke of the fragmented system of information available to parents of children with autism and the need for the creation of a one-stop-shop for information about the support that is required by families.

Jon Philpot, Principal Manger for Special Needs & Disability in the Children's Services department at West Sussex County Council, acknowledged that in the past, education, health and care support were not joined up, leading to children falling between the gap in services.  This caused huge frustration for parents who had to battle to get the support their children needed.

But he explained how, following the Government's Green Paper on special educational needs, West Sussex was introducing a 'pathfinders scheme' to test the proposals.  A single process and integrated support plan would replace special educational need statements and separate learning difficulty assessments.  Parents' views would be heard and taken into account when formulating the plans.

Mr Philpot hoped that the Green Paper proposals would be implemented by 2014, and that more health visitors would be given training to be skilled in early intervention.

Other speakers from West Sussex County Council spoke about how the joint education, care and health plan would work, and how the transition process from child to adult would be improved by better co-ordination and sharing of information between services, as well as better communication with parents.

The meeting also heard how the Government's proposals would mean a closer partnership between mental health and council services.

The session ended with Fabrizio Donati, General Manager of Autism Sussex and Richard Brown, the charity's Chairman, calling for more support for parents who still faced a "huge struggle" to cope with children with autism.

Nick Herbert summed up the proceedings by thanking the parents and local agencies for coming.  He said that while it was clear to everyone that money was in short supply at the moment, earlier diagnosis of autism and the pooling of funds with local agencies working more effectively together to offer a more joined-up service which could enable the resources available to be spent better.

After the event, Nick Herbert said: "Having heard from so many parents with children who have autism about the difficulties they face, I thought it would be useful to get the local agencies and parents together to draw attention to these problems and see how things can be improved.

"We heard some moving accounts from parents about how tough they have found things, but also some really good ideas for improvement and an encouraging new focus from the local agencies on how they are working more effectively together.

"I hope this is just the beginning of a useful dialogue and that translating the Government's new proposals into action will ensure better support for parents who need it in future."

Ends

Notes for Editors

1.    To listen to an interview with Nick Herbert on Sprit FM about the summit visit: http://tinyurl.com/buol2ho.

2.    Attendees at the summit included:

Katie Glover, Principal Commissioning Manager, Learning Difficulties, West Sussex County Council

Sue Coldham, Locality Manager, County Services for Adults with Learning Difficulties, WSCC

Jon Philpot, Principal Manager (Special Needs & Disability), Children's Services, West Sussex County Council

Aaron Gain, Principal Manager - Child and Families- Joint Commissioning Unit, NHS and WSCC)

Simone Button (Service Director of Children's and Young People's Services, Sussex NHS Partnership Trust

Janice King (General Adviser 14-19, Learning Service, WSCC) and Berry Bonner LeFur (Area Lead Targeted Intervention & Integrated Support

Fabrizio Donati - General Manager, Autism Sussex

Richard Brown - parent and Chairman of Autism Sussex

Victoria Thompson - local parent and Ambassador for National Autistic Society

3. In March 2011, the Government launched, the Green Paper, ‘Support and aspiration: A new approach to special educational needs and disability'.  For further information visit: http://tinyurl.com/3b7yxjo.

4. On 9 May 2012, the Queen's Speech announced the Government's intention to introduce a Children and Families Bill that would include Special Educational Needs reforms.  On 15 May, the DFE published its detailed response to the formal public consultation on the green paper and also set out the next steps.  It confirmed that the Government would introduce the Children and Families Bill in this session of Parliament and would aim to publish a draft Bill on the Special Educational Needs measures this summer for consultation and pre-legislative scrutiny.  For further information visit: http://tinyurl.com/d4g3ce8.