Children with disability grow into adults with a disability

Children with disability grow into adults with a disability. This theme is the focus of the British Academy of Childhood Disability (BACD) Annual Conference on 7 March 2008. As clinicians involved in assessing, treating, and caring for children with an evolving or established disability we always tend to focus on childhood. Even the name of our Academy and the name of this respected journal both focus on the child. But where is the place for the adolescent? It is recognized that the adolescent years are times of change for all individuals. Do we, as a service, change to respond to those evolving and new needs of the young person with a disability? This reminds me of a story told to me in my training by a keen developmental paediatrician, Dr John Cash. He recalled an adolescent patient with dystonic cerebral palsy and significant difficulties with fluency of speech describing an episode where he had been upset by his circumstance in school. The student requested an appointment with the head teacher and asked for a supporter to accompany him. At the appointment the student with the disability was asked by the head teacher to express his problems. He opened his mouth and began to speak; some time passed. The head teacher impatiently turned to the supporter and said, ‘Oh, you tell me!’. The angered student with the disability exploded, ‘That is just the problem!’ How often do we also do the same and not allow enough time to listen? However, the Every Disabled Child Matters Campaign (www.edcm.org.uk) has recently conducted a survey of children and young persons’ views named ‘If I could change one thing...’. Within this, young people with disabilities are clearly requesting to be included both in school and leisure but, in addition, are expressing the overwhelming desire to be listened to. As clinicians, it behoves us to listen and react to these views. This brings me to our role in supporting our colleagues in the professions allied to medicine. So often we have to work alongside committed therapy teams that are diminished or fragmented due to vacancies and recruitment problems. If our pharmacies no longer had a stock of penicillin or sodium valproate, we would shout loudly. I believe we need to shout loudly now about the problems that our therapy teams face on a day-to-day basis to keep the ‘show on the road’. This is particularly important with recent changes in NHS funding and cost containments by Trusts. The costing of a multidisciplinary assessment from a team of therapists and clinicians just does not feature in the funding options. To this end, John Bercow MP has been asked by the government to conduct a review of therapy services nationally and I am pleased to say that the BACD met with him in January to discuss these issues. We await the publication of his report. Altogether, there is clearly a lot to be done. As the current Chair of the Academy, I am delighted to be invited to write this Editorial. We are keen to continue and enhance our relationship with Developmental Medicine & Child Neurology and are delighted to be able to offer our Membership closer ties with this journal. Hopefully, together, we can promote relevant research to improve our interventions and evaluate their benefit in order to protect the service for young people with disabilities. The particular issues and problems faced by adolescents with disabilities need to be considered and I hope I will see many of you at the annual meeting of the BACD in Derby. The programme covers a range of conditions from acquired brain injury to autism from an adolescent perspective. Then the focus of the day looks at some of the issues of adolescence – puberty and sexuality – with reference to a young person who also has a disability. Both subjects have recently been highlighted in the media and both subjects raise questions of consent and the rights of the individual. Take a look at your clinics and ward areas; how would an adolescent fit in? Ask your therapy colleagues how they would like you to support the maintenance and expansion of their teams. Lastly, let us all remember to listen, so the story of that adolescent student becomes a story well and truly embedded in the past.