By Sarah Holton (Children and Young People's Officer: Complex
Needs, RNIB.)
VITAL (Visual Impairment Touches All Learning) is a network of regional focus groups for professionals who work with children with complex needs and visual impairment.
The bi-annual VITAL Convention, which brings the network together as a whole, took place on Monday 12th November 2012 at Hamilton House in London and focused on supporting children with degenerative conditions . We were seeking to address the challenges faced by children losing sight and hearing, as well as conditions that affect a broader range of skills and abilities, including life-limiting diseases.
The Convention was attended by 120 delegates who came from educational and therapeutic backgrounds.
Keynote speakers were Janet Thompson (HMI, National Adviser for SEND at Ofsted), Barbara Cole (Batten Disease Family
Association) and Gail Deuce (SENSE).
Access to education is widely accepted as an entitlement, a legal right and a positive benefit to children and young people as they grow and develop.
Assumptions are made that educating children and young people will take them on a progressive route upwards, where they learn more skills, acquire more knowledge and generally become able to participate in the world at an increasingly sophisticated level.

Working with disabled children can challenge these assumptions.
All practitioners in the field of special educational needs become accustomed to viewing progress in different ways. They accept the development of skills and knowledge at different rates, loosening hold on age-related expectations and hopefully embracing progress in lateral as well as vertical terms - sometimes children can become able to apply a skill in widening range of circumstances or with a broader number of people, rather than necessarily acquiring a larger number of skills. 1
Initiatives such as Quest for Learning 2 and Routes for Learning 3 recognise these changing pictures of development, embracing lateral progress and providing opportunities for the acquisition of skills in unconventional patterns to be recognised as "spiky profiles."
The education of children who have changing or degenerative conditions brings an entirely different challenge. Faced with a decreasing ability to access learning in the way they are used to, in the case of children with progressive vision or hearing loss, we are seeking a fine balance in terms of how learning activities are framed. On one hand, the people supporting the child and family hope to maintain optimistic targets for learning, giving the child or young person the motivation not to lose any sense of potential. But circumstances often mean also embracing and accepting the inevitable change, and possibly reduction to rate of progress that learning to cope with increasing sensory impairment will bring.
In the case of children with degenerative conditions that affect a more global range of skills and abilities, such as Batten's Disease, the educational challenge is enormous. Practitioners are faced with the task of working in an environment which is focused on progression and increasing ability, with children who are losing the skills, knowledge and understanding that they have already learnt.
Education becomes about learning to manage the changing picture of the child's abilities, and developing strategies to best

enable the child to thrive. This can involve the acquisition of new skills to meet different physical, sensory and cognitive abilities, and perhaps embracing progress as the maintenance of skills and /or the prevention or slowing of deterioration.
We would hope that the value of this work is always felt by the practitioners involved, even if a results and attainment-focused education system may make it difficult to formally demonstrate or celebrate good practice.
There are increasing numbers of children with complex needs in schools largely due to medical advances.
4 Successive legislation has ensured that all children, regardless of severity of special educational need, are entitled to education in school. The impact and demands on educational professionals must be recognised and supported so that the children can receive the best provision possible.
The health community are comparatively well-resourced in supporting children with degenerative or terminal conditions, but it was felt that attention to the educational support of these children and young people would be worthwhile. We wanted to create an opportunity for expertise and experience on this topic to be shared with education professionals to enable them to have confidence and motivation in their everyday teaching activities and to identify best practice.
A central theme of the day was the dearth of opportunity for education professionals to receive training and guidance on these issues. It would seem that the health, therapeutic and obviously the palliative care field does focus on this area considerably, but that events for educational professionals focusing on the learning needs of children with degenerative conditions are not as common.
Evaluating the event, one delegate reported: "Now I don't feel so unusual in my feelings".

Through discussions and plenary sessions, the delegates clearly shared an understanding of the challenges that face teachers when trying to demonstrate progress, valuable and effective intervention and the worth of specialist input when the children are losing skills and abilities.
Janet Thompson outlined how the Ofsted framework could accommodate and record good and outstanding practice with these children, and put particular focus on the spiritual, moral, social and cultural development of children within a school.
Through case studies and considerable professional experience ,
Barbara Cole and Gail Deuce gave practical advice and strategies about how to understand the needs of children losing skills, how best to manage and meet these needs and how to maintain skills and wellbeing for as long as possible by working particularly with long-term memory.
Another theme related to the timing of support and how learning techniques and support strategies (such as braille, or using handunder-hand signs) need to be introduced at the right time for the child. This may be before they become essential, but not so early as to propel the child or family too far forward - preparing for future or changing needs sensitively, allowing the child and family to come to terms with a changing picture.
Workshops offered an opportunity for discussion on a range of topics such as how to discuss degenerative conditions with children by Melinda Edwards (Clinical Psychologist, Evelina
Children's Hospital) . We also addressed emotional support for staff, navigating paperwork processes such as Statementing and annual reviews. A parent who is also trustee of Together for
Short Lives , Anna Gill OBE , presented the most well-received workshop, which was discussing the perspective of parents of children with life-limiting conditions.

The core themes taken from the event were as follows:

That we only scratched the surface of a topic which warrants far greater attention. A strong strand of the feedback was gratitude from the delegates that they had the opportunity to attend a training day focusing on these issues, but they would appreciate more time for questions and discussion of their own particular issues and cases.

The Ofsted framework can recognise quality of provision for children not able to make typical progression, but teachers may be required to consider alternative ways of demonstrating the positive impact of intervention , for example through the use of case studies.

The challenge in supporting professionals in this field, when the topic is so sensitive and involves the differing perspectives of the people involved and the constraints of the systems they work in - the child themselves, their peers, the parents, wider family, staff directly working with the child and the individuals from agencies involved in planning and decision-making. What is 'right' for one set of people may be wrong, insensitive or impossible for another.

That both practical issues and emotional issues need to be considered together . To address one without the other would be inappropriate.

Teachers can embrace the maintenance of skills as valuable and significant in children with degenerative conditions. The use of long-term memory can be used effectively to help a child retain understanding and abilities.

The value in addressing these issues as part of school systems and planning , rather than reactively to difficult and emotive individual circumstances. School staff and consequently the children themselves will greatly benefit from having in place emotional support opportunities for staff , structures such as a bereavement policy, and a shared recognition of the needs of all of the people involved in this work.

VITAL will be seeking to continue providing professional development on this topic, and the spring/summer 2013 round of regional meetings will extend the themes discussed at the
Convention. If you would like to join a regional group, or receive details of forthcoming meetings, please email vital@rnib.org.uk
to register interest, or visit our Events and networks page .
1 Best, Tony Structuring the Environment , Deafblind International http://www.deafblindinternational.org/review1_q.html
2 Quest for Learning http://www.nicurriculum.org.uk/inclusion_and_SEN/assessment/pmld.asp
3 Routes for Learning http://wales.gov.uk/topics/educationandskills/schoolshome/curriculuminwales/additionaleduca tionalneeds/routeslearning/?lang=en
4 Rahi JS, Cable N (2003).
Severe sight problems and blindness in children in the UK
Lancet 2003; 362: 1359-65.