"We've had enough sympathy, now we want action"

Margaret Field says there were very few options available for her son after special school / /

By David Thompson

FAMILIES of young people with special needs in Northern Ireland are calling for urgent reform of what they say is a failing system. Children with a range of conditions such as autism, behavioural and learning difficulties and severe physical disabilities lose the educational support that they depend on when they reach the age of 19.

A report commissioned by the Northern Ireland Council for Integrated Education (NICIE) has looked at outcomes for pupils after leaving three special schools: Tor Bank, Loughshore and Castle Tower.

The full report is due to be published in October but The Detail has had access to the key findings:

  • The majority of school leavers across the three schools are in day centres, at home or in part-time work placements;
  • There is evidence of school leavers continuing to engage in day centres and part time work placements over a period of years;
  • There is no evidence of the school leavers transitioning into full time paid employment;
  • High levels of support for work placements provided by voluntary sector organisations;
  • Gaps in information about what happens to the young people increase over time.

The scale of the problem across Northern Ireland is not known as government doesn’t track the outcomes for these young people when they leave the school system – unlike other parts of the UK. Without accurate information on what happens to these children it is difficult to assess the kind of response required. The Department of Education collects statistics on the educational achievement of pupils who are ‘statemented’ with special educational needs (SEN) attending mainstream schools – but does not collect data on around 100 children who leave special schools across Northern Ireland each year.

LIFE AFTER SPECIAL SCHOOL

Children with a range of physical and mental conditions attend special schools in each of the education board areas across Northern Ireland. The schools provide specialised educational programmes tailored to their needs. When the children reach 19, there is no statutory obligation to continue to provide education.

This poses a particular problem for young people who struggle to communicate due to their condition. The support provided in the special schools often allows them a way to vent their frustrations, and some parents argue that bringing this support to a sudden end can be extremely detrimental to their behaviour and development.

Julie Jamieson lives with her 14-year-old son Henry in Newtownabbey. Henry has severe learning difficulties, and suffers from epilepsy and autism. He can only communicate using the Makaton system of signs and symbols. Julie says that any disruption to the routine of a child with autism can have a negative impact on their behaviour.

“School holidays are a nightmare because they’re out of their routine, everything is upside down. If they don’t get their own way they get frustrated – and because they can’t speak they have no way of articulating those frustrations. Their behaviour becomes difficult. So can you imagine what that’s going to be like with a 19 year old?

“Whilst they’re happy to be at home there’s no stimulus, and you can’t provide the stimulus at home that a school can. The social engagement is also crucial to them."

THE TRANSITION PROCESS

Pupils attending special schools in Northern Ireland go through a process known as transition to help them prepare for leaving the school environment. This begins at 14 and aims to provide suitable support and opportunities as they enter adult life.

Concerned about what effect the transition process will have on her son and family, Julie has been lobbying politicians and policy makers in Northern Ireland to get the system changed. The Post 19 Lobby Group has conducted research into the effects the current arrangements have on the young people and their families. It gathered the views of parents and carers from 21 special schools across Northern Ireland to provide a snapshot of the effect of transition on family life:

The report ‘The Impact of Transition on Family Life’ showed that:

  • 62% of the parents they interviewed are caring upwards of 70 hours per week for their child – and a majority of these children are still within the remit of children’s services.
  • 77% of parents and carers said that looking after their children had an impact on their own health.
  • 76% of parents who had already gone through the transition process had either reduced hours or given up their job due to the increased pressures placed on them.

The Northern Ireland Commissioner for Children and Young People Patricia Lewsley-Mooney told The Detail that the transition process has been on the political agenda for a long time, but that very little has been achieved. “Transition is a can of worms. You could pick (the Department of) education, health, employment and learning and you could find barriers in all of those. You could find models of good practice as well. It comes down to the hearts and minds and culture of some places and people.

“Transition is an issue that has been around for a long time. We’re still hearing the same stories ten or fifteen years later and thinking ‘what change has been made?’

“We could have all the legislation in the world, it doesn’t mean to say that it’s implemented. We’ve had the Bamford strategy and various legislation but it doesn’t mean a thing unless government implements it and makes the difference. It’s about listening to young people and acting on it.”

THENIGHTMARE” OF TRANSITION

Paul Field from Newtownabbey has autism and learning difficulties. He left Hill Croft special school in New Mossley last year at the age of 19. Now 20, he attends various weekday schemes provided by the voluntary sector.

Despite assurances that the transition process would begin when Paul was 14, his mother Margaret says that a lot of the decisions were made in his final year. Social workers were keen for Paul to attend further education college in Belfast, but his mother says that he is too naive, and that putting him in such an environment could put him at risk. He currently helps out at Antrim donkey sanctuary two days per week, Alternative Angles (a scheme which works with the health trust to provide employment opportunities for SEN young people) for two days and one day in The Base drop-in centre.

However, Margaret believes that the options that were available to her son were not appropriate to his particular needs. “The system is very rigid, it’s not tailored. If the children don’t fit the system they don’t try to think outside the box,” she says.

When Paul was seven Margaret took a career break due to the demands of caring for him. She was unable to return to work for twelve years. However, since Paul left school the burden on her as a carer has increased.

There is no longer a free transport service for Paul, and Margaret now does most of the driving herself.

Margaret ended up on anti-depressants during the transition process, which she attributes to the stress involved. “Of all the trials we have been through when Paul was growing up, this was the worst. Everything came to a head in a short period of time. The support network which had been there in terms of school environment, education and transport was all taken away.”

She says that the benefits system created additional problems for the family. When Margaret applied for Employment Support Allowance (ESA) for Paul, he was called in for an interview at the Jobs and Benefits office in Antrim to assess his ability to work – despite having a ‘lifetime award’ for disability benefits due to his condition. She said he wouldn’t have been capable of taking part in the interview, due to the nature of his condition.

Although the agency eventually accepted that Paul was not fit to work, he had to provide a sick-line from the doctor to prove this. This was initially for six weeks, then six months. His current sick line lasts until April 2015, but Margaret says she will have to go through the process again when this expires. Margaret believes that a more joined-up approach from the various agencies involved in Paul’s care would have prevented this situation from developing.

We contacted the Department for Social Development (DSD) who are in charge of benefits in Northern Ireland, about Paul’s case.

DSD said it could not comment on individual cases. It added that the Social Security Agency (SSA) are currently considering measures to help young people with learning difficulties leaving school. A spokesperson said: "It is normal procedure for SSA to contact DEL when a new ESA claim is made. DEL will then decide whether the claimant should take part in the work focused interview process.

“As a result of a Work Capability Assessment, SSA decide if a customer has a limited capacity for work. If so, they can be placed in a Support Group which means they will not have to work and are no longer required to provide evidence of their incapacity.”

A Department for Employment and Learning spokesperson said: "The normal procedure for all clients on ESA is to be invited to attend the Jobs and Benefits Office for a work-focused interview (WFI).

“The clients mother contacted the Jobs and Benefits office and advised that the client attends Hillcroft Special Needs School due to autism and learning disabilites and that, he would start a programme Alternative Angles through Triangle (a support group) in September 2012. Whilst the client is in a support group, he will be exempt from attending WFIs.”

TRACKING OUTCOMES

Unlike other parts of the UK, there is no system in place to track the progress of pupils with special educational needs when they leave school. In Scotland, there is a statutory obligation to track pupil progress. In response to a Freedom of Information request from The Detail, the Department of Education in Northern Ireland confirmed that it “does not continue to collect information on pupils (with special needs) once they leave the school system.” Although there is mention of SEN pupils in the Department of Employment and Learning’s NEETs (young people not in education, employment or training) strategy – there is no specific scheme to address the needs of this particularly vulnerable group of young adults.

Bernie Kells is a former teacher and works as a contract project manager within the education system. She has a son with Aspergers syndrome. Having experienced the system in a professional and personal capacity, she sees huge problems that need to be overcome if it is to work effectively for those who need it most.

“Our experience was that there is a disconnect between the agencies – health, social services, education, qualifications and employment. There is no holistic approach. The only people with that view are the pupils themselves. There are some great voluntary sector organisations around, but they lack statutory clout. They don’t have ministerial or departmental status. There really needs to be somebody spearheading this.”

She continued: “People in this situation are vulnerable and disempowered. There are little pockets of activity going on, but they’re all voluntary sector. These people don’t have the political nous or the time to address the issues involved.”

QUALIFICATIONS AND WORK

A range of education and work opportunities are available to most young people when they leave school. However, this is not always the case for those leaving special school. Often the choice is limited to a day care centre. Many leave school with no formal qualifications and some pupils say that they would like more say in what they do afterwards.

Chris Tracey has worked with the Council for Curriculum, Examinations and Assessments (CCEA) in the Qualification Directorate. Now retired from that role, he maintains an interest in the area of qualifications and special needs. He believes that it is essential to provide relevant qualifications and meaningful work experience for SEN young people.

“I would love young people with special needs to be assisted into meaningful employment that is right for them and that is positive for them,” Chris says. “The driver for mainstream education is qualification success – GCSEs – you can see where the problems might start to present themselves for people involved in special education.”

The CCEA has been working with special schools and learning support centres for two years to trial learning programmes suitable for SEN pupils. The work trialed qualifications at Entry Level, which is designed for pupils for whom attainment at GCSE level is an unrealistic target. This work would ensure recognition of the achievements of SEN pupils within existing qualifications. The recommendations are due to be submitted to the Department of Education in September.

Chris Tracey believes that this is important to stress that the key word is ‘meaningful’. “Young people with special needs need to be assisted into meaningful employment that is right for them and that is positive for them. They will always need support of some kind, they’ll always need to be monitored but they should be assisted towards as much independence as possible. But we shouldn’t ever let them become lost.”

GOVERNMENT RESPONSIBILITY?

Due the complex and varied needs of young people leaving special schools and because of the way government is structured in Northern Ireland, responsibility for transition falls across several government departments. These include health, education, social development and employment and learning.

In an interview with The Detail, Employment and Learning (DEL) minister Stephen Farry said the current situation was far from ideal.

However, he expressed doubts that transitions could be dealt with under a single department. “I’m not sure that’s realistic given the very large diversity of provisions. To give an example, we could farm off FE (further education) for those individuals with learning difficulties into an overall service run by Health. But what we then end up doing is segmenting off those with difficulties from the rest of the FE population, which is in itself counterproductive. You want to try to mainstream people as far as you possibly can in FE provision,” the minister said.

“Equally you want to try to encourage young people into employment where that is appropriate. You’re inevitably going to get a situation where post-16 or post-18 is going to lie with different departments. But I would accept that its a real challenge for us to make sure we are as efficient and effective in coordinating what we’re doing – and where there’s an interface, ensuring we’re actually overlapping rather than leaving a gap.”

The Minister says one solution to the problem may be the extension of the statementing system post-19, perhaps until 25.

“It’s something that as a department previously we had not considered on the grounds that we had felt the various provision was there. I am conscious however that it’s something that has been considered in England and Wales. So it’s something that we now are having a fresh look at to see if that could be a means of giving greater clarity, greater certainty to families as they progress through the transitions phase,” he said.

Mr Farry also says that there are challenges in getting those SEN young people who are capable of working into a job. To tackle this he said that his department was considering ways to encourage companies to take on people with disabilities.

“One of the things we’re considering is whether as part of the rollout of social clauses, as part of public procurement, as well as doing things like companies winning big contracts having to take on so many apprentices, for example. They could be encouraged to create job opportunities for people with disabilities as part of the contract. Support will be made available,” he said.

Julie Jamieson from the Post 19 Lobby Group says that the issue is one of equality. She said: “It’s an equality issue. My son is not being treated as an equal citizen here in Northern Ireland. This is supposed to be an inclusive society and he’s not included within society if he doesn’t have the right – or choice – when he leaves school to go on to further education because they can’t manage him within that environment.

“So where’s his choices? Where’s his equality? And what impact does that have on us as a family? What does it say about us as a society if we can’t look after these most vulnerable? Surely that’s our role and responsibility and I think they just need to get their act together. We hear all the time that ‘you’re the parent so you’re the expert’: well then treat us as experts.

“I’ve had enough sympathy, I’m sick of sympathy. I want action,” Julie said.

© The Detail 2013