Mum wins fight to get young special needs son back into full time education (From Milford Mercury)

Mum wins fight to get young special needs son back into full time education

11:00am Sunday 17th March 2013 in News

After months of fighting, a young boy from Hakin with special needs is finally back in full time education.

Julie Lane had been battling Pembrokeshire County Council since her eight-year-old son James was excluded from Fenton School's special needs unit - a decision that was overturned by an independent panel.

James, who has suspected Prader Willi syndrome had been attending the unit for special educational needs (SEN) children for since 2010 but was excluded in December last year and has been out of school since then.

"In September just gone they started noticing a change in his behaviour, he was more frustrated, more aggressive and they couldn't cope with him at all. His behvaiour was getting worse at home - he was coming home like a tornado.

"After he was excluded we went to a normal appeal at Fenton and that was turned down so we then went to an independent appeal and had it overruled straight away.

"I've been fighting to get him back in full time education since," said Julie.

Julie, who has two other young children, said that the plan for James had been to go to Portfield Special School when he finished infant school but there had not been any spaces but thankfully, after a number of false starts, he started at the school on Monday.

Up until this week James spent three mornings a week at Pembroke Dock's Blue School taking part in sensory play.

"I've had endless meetings at the council but every time there's an excuse, James' start date at Portfield changes all the time," said Julie who has also faced delays in accessing health care for James, including getting a proper diagnosis of his problems.

"He's suffered so much and really it's for being disabled because he hasn't done anything wrong. The last three years have been a fight bit since December it's been a nightmare," she added.

It is hoped that as James settles back into a routine his behaviour will improve and he can begin his SEN education.

Pembrokeshire County Council was asked about the delay in getting James back into school, a spokesman said: "James will be admitted to Portfield School on a full time basis from Monday, March 11th."

 

Group set up to help other mums in a similar position

 

Despite being busy fighting for the rights of disabled son James, young mum Julie has also been thinking of others - setting up a support group for mothers in a similar situation.

Julie set up Supporting Parents and Children Experiencing Difficulties Pembrokeshire (SPACED Pembs) and with just four meetings under her belt has already attracted 20 families in need of support.

Be it advice from parents who have already overcome health and education difficulties faced by their children or just an opportunity to talk openly about issues and concerns the group is there for anyone needing it.

"There are about 20 mums with a mix of younger and older children of all different levels, I made it an open access group. We have mums coming along who have been through it and mums that have just started it.

"The whole point of the group was for mums to come every week and vent off and try and sort things out with each other, offering advice and sharing knowledge," said Julie.

Along with independent advocate, Hayley Wood, SPACED Pembs provides advice, support and hopes that, once more established, it will be able to fight for improvements for SEN children in the county as a group.

Milford Haven councillors Guy Woodham and Stephen Joseph have also attended meetings to find out more about the problems families face and what they can do to help.

One mum, Rose Gray, said: "Because you don't always know what your child is entitled to itÕs hard to argue, and obviously, you're emotionally involved as well and that makes it difficult at times."

Others, including Jessica Dooner and Barbara Laugharne, said the group stopped you feeling like you were the only one going through similar situations.

SPACED Pembs currently meets every Wednesday, 5.30pm, at Milford Perk, Charles Street, Milford Haven, and anyone struggling with SEN children is welcome to come along.

There is also a group Facebook page called Children with Difficulties.

 

Health Board response

 

Hywel Dda Health Board were asked about the delays that mothers at the group had experienced in getting a diagnosis for their child.

A spokesman said that the process is very complex and requires input from a range of healthcare, educational and local authority professionals.

A spokesperson said: "ASD diagnosis is a very complex process requiring input from a range of healthcare, educational and local authority professionals.

"Many children referred for assessment will not ultimately receive a diagnosis of autism, and for others, due to complexities in the nature of this condition; the assessment process can be long. However no child or young person awaiting a diagnosis should have difficulties in schools providing the support children require as services are provided to meet a childÕs individual needs and not their diagnosis.

"The Health Board acknowledges that waiting times for the diagnosis of Autism, in each of our three counties, can take some time and understand how sometimes this can cause anxiety and frustration. It apologises for any unavoidable delay families may face. Our records currently indicate that total waiting times (which includes wait up to first assessment and once on the pathway) are in the region of two years in Carmarthenshire and Ceredigion and four years in Pembrokeshire," she added.

Hywel Dda is currently trying to recruit a community paediatric position and has developed an action plan to address the waiting times within the coming year.

The plan is based on the NICE guidelines for the Recognition and Diagnoses of Autistic Spectrum Disorder in Children and Young People and is awaiting formal Health Board approval.

"The plan will also need agreement from the three local authorities to ensure their involvement in the assessment of children with possible communication problems. Due to the close working required with local authorities and education providers, at this time, it is not possible to transfer the care pathways of children from one county to another," added the spokesman.

The Health Board said it cannot comment on individual cases but would urge any parents with a concern to get in touch directly so issues can be investigated via the patient support and advisory team on 0300 0200 159 or email hdhb.patientsupportservice@wales.nhs.uk