Diabetic children denied schooling given hope after legal intervention

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The country's leading education law specialist has won a trio of cases at Tribunal after children with Type 1 Diabetes were finally granted special needs status.

Diabetes

Now, the 3 Surrey-based families hope to send their children, all of whom are at Key Stage 1 level (5-7 years old) to mainstream schools in the knowledge that the local education authority must put in place provision to manage their condition.

Imogen Jolley, partner at solicitor MG Law who brought the cases to the Special Educational Needs Tribunal, says the situation highlights a nationwide issue around Type 1 Diabetes and its varying treatment by local education authorities across the country.

"This is a serious condition which needs constant management, particularly for a child who's only five or six years old. The children's diabetes was having an effect on their ability to access education with their parents either having to home educate, or pay for private tuition in order to manage their condition safely."

According to Diabetes UK, local authorities and primary care trusts can expect between 100 and 150 children with diabetes to live in their area, with the current prevalence of Type 1 diabetes in children to be around 1/700-1/1000. "The fact we were forced to take these cases to the SEN Tribunal indicates that this particular local authority does not have a strategy in place to manage it, but I would urge them to look for guidance from other parts of the country where children can be cared for in a mainstream school environment with great success."

Teresa Dodson, whose daughter Imogen was one of the three children granted a SEN statement by Surrey County Council, said: "We're so grateful to MG Law for their support and understanding in bringing our case to Tribunal. Although we still have some challenges to face and Imogen will probably not start school in time for September, there is light at the end of the tunnel after many years of frustration."

Case Study: Surrey LEA shamed over Diabetes Child refused SEN

Like all good parents, Teresa Dodson and her husband Mark who live in Warlingham, Surrey want their daughter Imogen, who is almost six, to do well in school and enjoy making friends with children her own age. Instead, because Imogen suffers from the auto immune disease Type 1 diabetes and has so far been denied the full time teaching assistant she requires to meet her special educational needs, the couple have been forced to home educate Imogen as they continue their long battle with the county's Local Education Authority (LEA).

However, things are looking up thanks to her namesake Imogen Jolley from national education specialists MG Law who recently took up their case. The Surrey LEA has finally conceded and agreed to provide the Special Educational Needs (SEN) Statement required to enable Imogen to get the one-to-one support she's entitled to. However, according to Teresa there is still uncertainty as to when this will be issued and the end is not yet in sight.

Teresa says that their world was turned upside down four and half years ago when at 16 months old Imogen was diagnosed with the life threatening condition.

"As far as we were concerned Imogen was a happy, healthy toddler. Then one morning, nothing I could do seemed to fully rouse her and I became very worried," recalls Teresa.

Teresa booked a same-day appointment with her GP but was told Imogen's inertia was caused by nothing more serious than a gastric bug.

"My intuition told me something was seriously wrong so I drove straight to East Surrey Hospital. Thank goodness I did or Imogen wouldn't be here today," says Teresa.

She was sent to the Child Assessment Unit, the hospital's Emergency Paediatric Unit, where doctors recognised the symptoms of a diabetic ketoacidosis (DKA) coma and swung into action to save her life.

"It was every parent's worst nightmare, seeing her covered in tubes and drips, fighting for survival," says Teresa

Imogen's DKA was caused by her own body attacking her insulin producing cells and researchers such as JDRF UK, the type 1 diabetes charity, still do not know the cause of type 1 diabetes. There is nothing that can be done to prevent its onset, with the condition causing high blood glucose which, when the body cannot process it for energy it decides to break down other body tissue as an alternative energy source. Ketones are the build-up of poisonous chemicals in the blood which are a by-product of this process: If left unchecked they cause the body to become acidic and the end result is a coma and inevitably death if untreated.

"We were devastated by the news," says Teresa. "When Imogen was well enough to come home we muddled through as best we could in a state of shock. We had no option but to learn really quickly how to prick our tiny girl's fingers to do blood tests, how to give her life saving injections, and how to carbohydrate count to match the correct amount of insulin to maintain Imogen's levels and to prevent her going into a hypo or hyper state - both of which pose a danger to life.

Type 1 diabetes also means that during any illness or virus Imogen's body is unable to regulate itself due to the lack of insulin and this makes managing the illness a lot more complicated and dangerous due to the risk of the body producing ketones and causing dehydration.

"When she was two I joined a mum and toddler group but had to leave after just one day because Imogen caught the Rota virus and was in and out of hospital for the next three months. At times the strain has been unbearable as any illness can become life threatening,"
explains Teresa.

In August 2011 Teresa approached Surrey LEA for the SEN Statement. Initially the LEA refused to assess Imogen.

"Eventually I had a meeting with them but the person I talked to was very unhelpful. As part of the assessment process, the LEA's own educational psychologist finally made a home visit and accepted Imogen qualified for the SEN statement but they stalled the process," says Teresa. "I went back and forth to the LEA for three years but nothing materialised. I've been at my wits end."

Type 1 diabetes interferes with cognition, and the only way to ensure that Imogen is able to access the curriculum is by constant blood glucose monitoring and regular insulin injections.

MG Law Support

Imogen Jolley at MG Law had already been working with a number of other parents in a similar predicament to the Dodsons and took up their case in August 2013. "It is important to be able to recognise the signs of low blood sugars and high blood sugars as little Imogen is too young to realise this herself. A full time Teaching Assistant (TA) can give her this support so that she can enjoy school life and gain the educational and social skills she needs through mixing with the kids her own age. There is no good reason for children with Type 1 Diabetes to be isolated simply because they have not been given the SEN Statement to which they are legally entitled to."

The Dodsons are keen for Imogen to go to Greenvale Primary. She initially attended Warlingham Village Primary where Teresa's elder daughter went before. In the absence of a TA, Imogen, who will be six in September, had to be pulled out of Warlingham Village Primary school after just one day because despite reassurances from the Head, it became clear staff were not equipped to meet her needs due to the lack of support from Surrey LEA.

The situation is further complicated because whichever school accepts Imogen has to pay for the first £6000 towards the cost of a TA out of its school budget.

"When glucose levels are low or high it interferes with sensory issues, affects cognitive ability and causes behavioural issues which are all established criteria for SEN. It all boils down to money and Surrey is one of the country's richest LEAs," says Teresa.

It was only when Teresa threatened to take Surrey LEA to a SEN tribunal and MG Law became involved that things started to change. The LEA has now agreed to issue a proposed statement but, several weeks on, they have still not done this.

"Imogen will certainly miss out on starting school in September because of this," says Teresa.


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