Still left in the shadows
The Paralympics were a joyous occasion. World-class athletes thrilled crowds with their skill, power and tenacity, banishing the pity and patronising admiration of "bravery" that so irks disabled people.
But if public perception of disability was transformed through that event, the same cannot be said of day-to-day realities for young people with additional needs in Scotland. A comprehensive report, A critical review and analysis of current research and policy relating to disabled children and young people in Scotland, fronted by children's commissioner Tam Baillie, is frequently shocking. It shows parents fighting exhausting battles for crucial services; teachers floundering without the training they need; and young people, segregated by misguided policies and perceptions, who leave school with low expectations of what life will hold.
The report finds that the scourge of bullying looms large and, perhaps most surprisingly, the policies that should make things better - Curriculum for Excellence, Getting It Right for Every Child, the concordat between national and local government - are not having the desired impact and may even "seriously disadvantage" disabled youngsters.
The transition into adulthood is the most problematic area: often a voyage into a frightening, complex world where the powers-that-be, no matter how good their intentions, fail in their duties.
It is this aspect that most perturbs Mr Baillie, having assessed the findings of the report's authors, Kirsten Stalker and Lio Moscardini, of the University of Strathclyde.
"People are not confident of the robustness of planning as they move from one set of support structures to another - they feel as if they always have to fight for services," says Mr Baillie.
The report, which examined more than 100 research documents and policy papers, found that disabled young people generally had low expectations of gaining qualifications at school, entering further or higher education, or getting a job. Parents in one study viewed their experiences of transition as "unanimously negative".
A major problem is the confusing "plethora of policy documents and initiatives and how they relate to one another". The Scottish Transitions Forum did call for a succinct summary of service providers' responsibilities and young people's rights, but that led to a response from the Scottish government - whose Opportunities for All policy guarantees a place in education or training for everyone aged 16-19 - that the policy framework was too complex to allow this.
Schools often start transitional planning too late. Young people have complained of being "invisible", and schools appear to lack knowledge about the range of options. Some parents at mainstream schools reported that no transitional planning meeting took place. Where it had, there was typically no preparation for families, the professionals present had not met the young person before, and a pre-set agenda was followed.
Sometimes a college place cannot be taken up because no transport or personal care has been arranged, and opportunities in colleges are becoming scarcer: part-time courses for young people with learning disabilities were cut by more than a third in 2011.
Further education colleges can have a very positive impact, but a consultation involving 30 young people found the situation in Scotland "in general, very poor". Problems included a lack of information and transparency about options for school-leavers, FE staff lacking communication skills, and many difficulties around funding.
The government has produced a range of policies to help young people into education, employment or training, but "there is little evidence that supporting social inclusion is uppermost in professionals' minds when planning . transition to adult services".
Mr Baillie underlines that children are often "living in really fragile circumstances" and heavily reliant on additional support - which often does not materialise until crisis point - with whole families sometimes on disability benefit. He fears the impact as cuts to benefits take hold.
Disabled children, it appears, still have to contend with "a widespread lack of awareness about, and negative attitudes towards, (their) conditions". Although it does not affect all disabled children, bullying is "widespread" in school, college and communities, acting as a "major barrier" to social inclusion.
A prominent theme is that of not having enough friends, if any. Disabled children often lose touch with primary classmates when they move to a special secondary. Sometimes parents create barriers: one child was not allowed to visit a friend because it involved crossing a busy road, another because of her diabetic treatment regime.
Many children come up against obstacles to socialising and recreation. One boy wanted to visit a shopping centre with friends but found the Shopmobility scheme only provided adult wheelchairs. Sports clubs and activities, especially football, are often no-go areas.
As a result "some children spend a good deal of time feeling bored at home with nothing much to do" or "only go out with their parents . to places geared to adults' social needs, with few other children present".
In mainstream schools an "institutionalisation of difference" has resulted in disabled children often learning, playing and eating in separate spaces from other pupils. In contrast, in some mainstream schools there seems to be a view that disabled children must be treated the same as other pupils, without allowing for additional support, "but how this is to be achieved has not been incorporated into specific policies and procedures".
Adults do not always recognise children's potential and can have low expectations, which the report links to disabled young people's own relatively negative predictions about life after school. Some youngsters feel held back academically at special schools. A study involving 21 primary schools, investigating opportunities to learn a musical instrument, found that no child with a physical impairment or severe learning difficulties received instrumental lessons.
Many teachers believe they are not capable of teaching all children. One study found that teachers in special schools struggled particularly with pupils with profound and multiple difficulties, which the researchers attributed to a lack of appropriate training.
There are concerns that ASN training for teachers is inadequately covered by both universities and education authorities. A study revealed that most local authorities did not make training in this area mandatory.
There is a lack, too, of reliable, comprehensive information about numbers, characteristics and needs of disabled children - "a barrier to promoting social inclusion since these data are required to inform planning in schools and services".
Despite legislation aiming to make mainstream education the default option, special schools' rolls have not dropped significantly. Children with additional needs - notably those with social, emotional and behavioural difficulties - figure disproportionately among school exclusions, indicating a need for much better support, particularly in mainstream schools.
Mr Baillie questions whether overall approaches are still too muddled: "I don't think we have really settled on inclusion, one way or another," he says.
Professor Stalker and Dr Moscardini identify a risk that recent education policy may in some ways disadvantage disabled children, especially those with complex needs.
Curriculum for Excellence's health and well-being experiences and outcomes contain no specific reference to educating non-disabled children about disability. It is difficult to find information on the Education Scotland website relating to CfE for disabled children, and unclear in CfE if disabled children will have access to all parts of the curriculum. The report highlights a "danger that for disabled pupils, CfE will simply be mapped on to existing practice with no real change taking place".
Disabled children have been "relatively invisible" in the national Getting It Right for Every Child (GIRFEC) policy, it says. There are limited references to disabled children in policy documents and practice briefings. The early intervention model advocated by GIRFEC is deemed important in tackling problems before crisis point, but it is "unclear how far services are able to work in this way in the current economic climate", which "may increase the likelihood of residential or segregated services being used".
The GIRFEC approach, if effectively implemented for families with disabled children, would be "hugely welcomed" and resolve most problems. The report acknowledges some progress, but it is likely to be held up for years by "entrenched problems".
EIS general secretary Larry Flanagan says: "There appears to be a fragmented and inconsistent approach to GIRFEC implementation planning within and across local authorities. It seems that at a time when more and more pupils are being identified as having additional support needs, the underpinning structures and resources are not in place to deliver effective and timely practical support to these children and young people."
The EIS also shares the report's concerns that the concordat between the Scottish government and local authorities has "seriously disadvantaged" disabled children, with funding no longer ring-fenced.
The report finds that the sum spent on services for disabled children has been "almost impossible to identify"; there is "a widespread view that only a fraction . was spent on improving support for this group". It predicts that "the `postcode lottery' of provision is set to continue".
Richard Hamer, director of external affairs at disability charity Capability Scotland, says: "This report depicts a depressing picture of Scotland's failure to address the inevitable, but not insurmountable, barriers that disabled children and young people face in our society. They are clearly a long way from getting the education and support that they have a right to expect, and deserve."
Specialist services, such as the charity's own schools, and further education courses were falling victim to local authority cuts. Mr Hamer called on the government and local authorities to address the "scandal" of the high number of young disabled people not in education, employment or training.
Ken Cunningham, general secretary of School Leaders Scotland stresses that the research spans 12 years, and he would be "very surprised if more recent findings did not find an increased awareness of the needs of disabled children". Legislation - not to mention the Paralympics - had helped raise awareness and the targeting of resources, and there were now more groups "ready to stand up for the rights of such children".
"The challenge now is for local authorities, schools and government itself to enable funding for all that is necessary to support disabled children, including the time and resource for CPD," he says. "That is a major challenge in a time of financial constraint and the delivery of new models of education, qualifications and training."
The government said: "As the report identifies, full implementation of Getting it Right for Every Child will address a lot of the issues faced by families of disabled children".
A spokesman added: "Local authorities are required to identify, meet and keep under review the additional support needs of all pupils for whose education they are responsible and to tailor provision according to their individual circumstances.
"Curriculum for Excellence also recognises that there should not be a `one-size-fits-all' approach to education but a recognition that every child is different and has different requirements.
"We are currently consulting on legislation to improve outcomes for all children, which is providing an opportunity to explore further how the interests of disabled children and all children and young people can best be improved."
The report recommends several courses of action, including the production of a simple guide setting out children's rights and service providers' responsibilities, an awareness-raising campaign led by the children's commissioner, and - pointedly, given references to their "invisibility" - the establishment of a national young people's forum.
Link to the report: http:bit.lyPnEFLe
13 - Reduction in part-time courses for young people with learning disabilities in Scotland's FE colleges, 2011.
0 - In a study of 21 primaries, the number of children with a physical impairment or severe learning difficulties who received instrumental lessons.
4:1 - Ratio of exclusion for pupils who have additional support needs to those who do not.
6 - Explicit references to additional support needs in theDonaldson report, including four specifically to dyslexia and autism.
12,000 - Estimated number of children with learning disabilities in Scotland who need access to mental health services.
`YOU NEED TO TAKE YOUR PLACE IN THE WORLD. THIS IS ABOUT MAKING SURE they ARE READY'
At Ashcraig School in Glasgow, the future of its pupils - who have physical andor visual impairments - beyond school is very much on the agenda from when they arrive in S1.
"We are not looking at a first-year, but at the young person who will leave school," says acting head Marjory Chalmers.
Employability is a subject taught from first-year, and speakers, including inspirational former pupils, come to the school regularly. Teachers work closely with educational psychologists, council "Future Work" officers, health professionals, Skills Development Scotland and others.
The school has a principal teacher of employability, as well as its pastoral care team, to help youngsters realise their ambitions. Pupils are regularly part of discussions about their own future, rather than having decisions made over their heads.
In S4, all pupils have the opportunity to spend time in a workplace - if possible through a week's work experience in an industry they are interested in. Placements may be specifically designed to help them into vocational courses of study or work.
The school also focuses strongly on other achievements, such as disability sport. It is part of a wheelchair rugby pilot programme, and two former pupils were in the boccia team at the London Paralympics.
"We want our young people as independent as possible, but with a realisation that they won't be able to do everything," Mrs Chalmers explains. "You need to take your place in the world, whatever that might be. It is about making sure that they are ready for it."
S6 pupil Terri Wilson, from Coatbridge, told TESS: "I feel that teachers listen to me, take on board my opinions and help me identify subjects and courses at college that I would enjoy and be successful in.
"The school worked closely with me and my mum throughout and I always felt valued and respected. I would like to be involved in childcare or work in a florist's when I leave school and I am really happy to be attending Anniesland College as part of the supported pre-vocational course in childcare."
`THERE'S NO GENUINE PROVISION'
Heather McNaughton-Wilford, whose 17-year-old son Andrew McNaughton has severe cerebral palsy and is leaving Capability Scotland's Stanmore House School in Lanark, shares her frustrations about moving on to further education.
"There's so much talk about mainstreaming, but it's so difficult for Andrew's needs to be met in a mainstream school or college. There's no genuine and meaningful further education provision in Scotland for young disabled people; what there is focuses on life skills, not learning.
"Our experience of education has been one of lack of choice. We had to sell our home and move from one end of Lanarkshire to the other in order for Andrew's school fees to be paid. Before that, his dad was working day and night shifts to find the money for his education. We are in a similar position now that Andrew is due to leave school and wants to go to college.
"We were told Motherwell College did not allow young people with additional complex support needs to choose their own courses. Andrew's only option was their eight-week Access 8 course, of `taster sessions' of recreational courses. At the end he may have been offered two afternoons of similar recreational-type activities.
"Andrew is a bright young man, and wants to continue to achieve and develop educationally. He can take part in recreational activities with his friends and family. He wants to go to college for a meaningful educational experience.
"We looked at other colleges around Scotland, and it became very clear there was nothing that could offer what Andrew wanted and needed. I did some research, discovering this has been the case for a number of years. Young people used to regularly cross the border to England to access the specialist colleges there. We visited these colleges and there is just no comparison with the recreational course at Motherwell.
"The Scottish government looked at whether we should have our own specialist college in Scotland; the decision was made that additional funding would be provided to local authorities instead. But I do not see any evidence that this money has been used to provide an alternative.
"Andrew has applied to Beaumont College in Lancaster, which is a bit like Fame Academy. He will have the opportunity to make films, music, dance productions, and continue developing his communication and IT skills. He has the right to education at an appropriate level, and we will continue to campaign for this.
Original print headline: Rights of the young disabled have taken a wrong turning