p 1

ACT’s Best Practice Guide: Prompts for care in the last hours and days of a child or young person’s life

Katrina McNamara-Goodger

The ACT Best Practice Guide, Prompts for care in the last hours and days of a child or young person’s life aims to provide workers with an easy to reference document that can be easily carried with the worker. While there are many other fuller references to care at end of life, this guide aims to be a short reference document that provides a short list of prompts to support best practice. It was developed with the support of a number of experienced children’s palliative care professionals. ACT is the national charity that represents children with life-limiting or life-threatening conditions and their families (www.act.org.uk).

1362 words

p 3

Photo Feature: Alive and Visual. First Movement adventures with digital arts

Caroline Bagnall

This selection of remarkable photos come from Derbyshire-based arts organisation, First Movement, and feature learning-disabled people involved in digital arts and making innovative and experimental use of new technologies. Live video links between First Movement’s Level Centre and their Level Mobile Studio bring people from miles apart into the same performance.

15 photographs and 433 words

p 8

An interview with Professor Hilton Davis

Part III

‘Since I wanted to develop the Model as far as I could through research and to disseminate the work, I approached the Trust management team to allow me to step down from my role and to form a centre dedicated to work on the Model. Fortunately they agreed wholeheartedly and allowed me to set up what became known as the Centre for Parent and Child Support….I imagine that this agreement was achieved at least partly from the fact that the Centre would contribute international recognition for the Trust and significant revenue. However, no doubt our enthusiasm for the project was important.’

789 words

p 16

An alphabet of helpful hints: J is for Joint working

Peter Limbrick

‘Some parents might assume that when they ask a practitioner for help with a particular issue, they are asking the whole local multi-agency early support system – and then become very disillusioned and let down when they discovers their plea did not go beyond the individual practitioner and perhaps her team. Conversely, other parents might not have expected their observations about their family problems to be spread across the local agencies.’

1085 words

p 19

 Infant Massage for Children with Disabilities/Special Needs

Anita Epple

Baby Massage is a wonderful way for parents to use positive touch. This gives the opportunity for special time together; incorporating not only the massage but also therapeutic hugs and holds, fun with nursery rhymes and music. Baby massage is also a fantastic way for parents to learn how their baby communicates with them, enabling parents to understand what their baby wants and comfort them with loving touch.

872 words

p 22

A Town Like Alice – Episode 10

Deborah Berkeley

‘Thank goodness for school no. 3, with its frank admission that inclusion hadn’t been the best solution for all their pupils with SEN, but a total willingness and ‘up for it’ attitude that I found really welcoming. They learned Alice’s name and kept using it, too. If only they had had a bit more experience, I might feel confident about her going there.’

665 words

p 26

Promoting a Learners’ Charter

Gerry German

There needs to be an agreement by all of us about educational provision in modern, multi-ethnic Britain. The ones really to be consulted are children and young people who combine knowledge of life at the sharp end with a vision of a society where they could be at the same time happy and secure – and imaginative and co-operative in developing individual, community, national and global potential. Gerry German anticipates a new Learners’ Charter to be published in summer 2010.

1103 words

p 28

Helping parents of disabled children help themselves with their relationship

Justine Devenney

Adjusting to the demands of parenthood is a testing time for all couples. When their child has a disability, parents face increased financial worries, isolation, stress, and the prospect that as their child grows, these problems will not diminish. Research shows that poor relationships affect children….The two key elements to supporting these families are reducing pressure and strengthening their relationship – which in turn will add to the protective factors for their children. One Plus One, the UK’s leading relationships research organisation, has developed a new web service for families called thecoupleconnection.net In this article, Justine Devenney of One Plus One gives an account of the service, of how it helps parents to help themselves, and of its focus on parents of children who have disabilities.

1674 words

p 32

TAC as the family-owned organisational nucleus making the best use of limited resources

Peter Limbrick

The focus in this essay is on how each child’s TAC can function in early childhood intervention as the family-owned organisational nucleus – a persisting organisational nucleus that is essential for each child who has a ‘multifaceted condition’ to keep all separate agencies, services and practitioners working together in an integrated and coherent approach. The essay describes the relevant characteristics of the TAC approach and the potential achievements of a child’s TAC, with just three or four people, functioning as the organisational nucleus for multi-agency, child and family-centred support. Peter Limbrick argues that the TAC System’s work patterns bring real benefit to busy practitioners, make the best possible use of limited resources and, most important of all, recognise parents’ natural central role in caring for their children. 

6869 words

p 37