There are more and more occasions when I’d like to be twenty years younger, and the great leap forward in education for children with severe and profound learning disabilities marks one of them. (I wouldn’t mind the sprightlier body, either.)
If Aoife were seven years old, I might be pondering whether to move her from special to mainstream school; I might be all excited about the new pupil:staff ratio (6:1 plus two classroom assistants for children with severe disabilities). It’s a long, long way from the situation six years ago when Micheál Martin’s department argued in the High Court that children with severe and profound disabilities would be unable to benefit from ‘ordinary primary education’ (The Irish Reports 1996: 35). I welcome the change of heart.
But this is a carper’s column, and some aspects of the transition to school cause me concern. Firstly, most of the arguments I’ve heard have focused on control: who is going to own and manage the new provision; who is going to be chief bottle-washer among the classroom assistants and therapists (who exist in recommendation, if not in reality); and what credentials will be acceptable.
If you want your severely disabled child educated in a mainstream school, you may have to take up Marie O’Donoghue’s cudgels. In spite of the comprehensive nature of the O’Hanlon judgement and its vindication in the Supreme Court, you will come up against governmental separation of powers, the famous ‘It’s-nothing-to-do-with-us’ syndrome which afflicts so many public departments. Physiotherapy, music therapy? Nothing to do with education. They take some responsibility for psychological assessments—if you’re prepared to wait. The ESY idea—an extended school year—which American parents fought for seems foreign to both the Department of Education and Children and teacher unions. But Judge O’Hanlon said in his judgement that ‘… lengthy holiday breaks … appear likely to cause serious loss of ground … in the case of children with severe or profound handicap’. Long holidays—beloved of most teachers and kids—are not good for children who depend on structure and routine to make sense of the world. And even summer projects which ‘welcome’ children with disabilities tend to make exceptions when the disability comes trailing tubes or special travelling arrangements. There’s a black hole between the Departments of Health and Education, where many of the services gained by voluntary providers could go missing.
And pace age-appropriateness, I haven’t found that people with severe and profound disabilities change that much as they age; yet once they cross the Great Divide into Adulthood, what’s available seems to diminish because the ‘educational’ element is over- There are few swings or slides or exercise-tricycles for adults; there are few computers; no switch-operated toys. Following Marie O’Donoghue’s lead, some other Cork parents have won an extra two years’ education for their eighteen-year-olds who came late to their primary entitlement. Does every parent have to fight separately for a similar service?
There’s a Green paper on adult education doing the rounds at the moment. The summary talks about lifelong learning and second chances—as well as the usual economy-driven aims like retraining. It doesn’t refer to people with disabilities, other than under the blanket of disadvantage—and certainly not to people with severe and profound disabilities. They too need the enrichment of learning, but they lack the ability to go out and get it for themselves. Arts and crafts for day-centre clients may not set the adult education skies blazing, but they could allow adults with disabilities enhanced life experiences.
I’m still ambivalent on the benefits of integration for children with disabilities like Aoife’s. I think she would have needed a small protective unit most of the time, and it would have made little difference to her whether it was in the corner of a primary school or free-standing. (It might, of course, be good for other children to see that people who can’t run, or who don’t eat very tidily, are still human.) What matters to Aoife is the group she’s with and the quality of the staff who look after her.
Now, some people think high credentials equal high quality, but in my view this ain’t necessarily so. Sometimes people who have a university degree make excellent teachers and animators for people with disabilities—sometimes they don’t. Perhaps the main purpose of training is not so much the techniques learned (though these are important in giving you competence and confidence) as the opportunities to test your suitability for your chosen career. It worries me that the Department of Education and Science has not moved to develop a diploma course for the training of teachers for children with severe and profound disabilities. I don’t recall anything in my long-ago H.Dip. course that was any help with Aoife. National teaching—or better still, Montessori—might have given me a little more. But even St Patrick’s College’s special education course is aimed at the teaching of children with moderate learning difficulties, whose progress differs significantly from that of those like my daughter. A lot of things that work with her we discovered by accident. We noticed her happy reaction to story tapes after playing them for another daughter. We hadn’t thought of them earlier.
Prospective teachers need opportunities to see the work of others on individual programmes; they need to learn how to incorporate sensory experiences; to work as part of a team (all those therapists!); and to evaluate resources. For, even if Mr Martin’s generosity continues unabated, no school can ever buy everything. They also have to find ways of meeting their own support needs in a situation where ‘progress’ (in the usually understood sense) may be slight. As Carol Ouvry and Suzanne Saunders (in Enabling Access) put it: ‘Familiarity and understanding of an increasing number of environments and the transfer of skills to new situations may be the pinnacle of achievements for some’. An ideological belief that ‘all’ teachers should be trained to deal with ‘all’ children should not prevent the development of a specialised course for such teachers. Of course, all teachers should have a disability module as part of their initial training course, but that, on its own, will not equip them to direct the education of six very different individuals. There are huge differences within the severe and profound label, with many children having communication difficulties.
Because relationship is of such paramount importance to these children, teachers need to be committed to the job. A teacher may be the only significant other for the child outside the family; she/he needs to be in it long-term. Special schools should not be waiting-rooms for a ‘real’ job. People with severe and profound disabilities find constant change difficult, and one of the most discouraging things for me as a parent is the short time some professionals stay in the severe/profound field. How many times have I been introduced to ‘our new physio/occupational/speech therapist’, only to find her vanished by the second or third session?
Integrity, cheerfulness and inner calm are old-fashioned concepts, but I would see them as the essentials for would-be teachers of children with severe and profound disabilities. Not everybody has them, nor are they confined to the alumni of colleges of education. In Canada, a qualified care assistant can upgrade her/his skills by taking a year’s top-up course. This should happen here. There was a large educational component in the work of good developmental day centres. It is important to value what was good in the past.
Our own National Council for Curriculum and Assessment (NCCA) has a committee looking at a curriculum for children with severe and profound disabilities. Setting out the parameters of a curriculum is important, in that it gets people to think seriously about ‘social integration and individual development’ (UN Convention, quoted in the O’Donoghue judgement) in terms of concrete possibilities. A curriculum should be a flexible guide—setting out the most likely areas to be fruitful without being too prescriptive. I’m sure the committee will look at the innovative work of people like Barry Carpenter, at the TEACCH methods, and at individualised computer programmes for children. I hope they emphasise relationships and do not get hung up on abstractions or compulsory inclusiveness. In the UK, Carpenter and Ashdown have looked at the idea of ‘entitlement to the whole curriculum’ (Enabling access). The British subject-based, rather than child-centred, curriculum can sometimes mean mental gymnastics for the teacher, while making little practical difference to the child with the severe disability. Ouvry and Saunders’s idea of the subject as the ‘vehicle’ through which the child learns, with the sensory approach as ‘the point of access’, is useful. They also stress that ‘unavoidable routines and care procedures should not be viewed as interruptions to teaching, but as valuable teaching opportunities’.
This is the first time that this group of Irish children (only about 2000 of them) are getting separate and serious consideration of their particular needs. The inequalities and achievement bias in our mainstream education system are mirrored in the special system: it’s the top echelons (the ‘milds’ and the ‘moderates’) that count. Often books and articles about learning disability ignore the severe and profound sector; often they tag it on as an afterthought. Barry Carpenter’s (otherwise interesting) book on education is a case in point. Enabling access has 23 chapters: one is specifically aimed at severe and profound disability; four or five chapters have general relevance; and the other seventeen are for the ‘mild/moderate’ sector. And yet ‘charting the individual pathways’ of such children is probably one of the most creative challenges in education.
So, roll on the work of the NCCA and a warm welcome to the new teachers!