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ITEM EX6b

SOCIAL & HEALTH CARE SCRUTINY COMMITTEE – 6 DECEMBER 2002

CHILDREN’S DISABILITY SERVICE

Report by Director for Social & Health Care

Introduction

  1. Professionals and parents involved in the Children’s Care Partnership are committed to the principle of consulting with children and young people about the service they receive, and ensuring their views are heard not only by the front line staff who deliver services but also by senior officers and members who commission and invest in them.

  2. A great deal of informal consultation with children and young people and with their siblings has gone on in the past, individually and in groups, often as part of children’s reviews. The Children’s Care Partnership, through its work with the Save the Children Fund Children’s Rights Commissioner and using the Children’s Rights Checklist, was keen to develop and refine children’s consultation, making efforts to consult children who do not communicate verbally and who access a range of services. The Partnership has been keen to use the results of such consultation to inform the way services are developed where possible. It also recognised that there was a responsibility to explain to children why it was not always possible to give them what they wished, in order to build their confidence that their views were being taken seriously.

  3. More formal consultation with children and young people was needed because of the proposed changes to the Children’s Disability Services. It was felt important to consult with children who were directly affected by the changes, both users of respite care services and their siblings, but that it was also important to talk to other children and young people who use community services. Residential respite services are used by relatively few children, 140 at present, and the 2001 Children in Need census, commissioned by the Department of Health, identifies that Oxfordshire has invested heavily in this service compared to other community services. It was felt important to consider the views of children who use these services too in order to review whether we have the right balance in service provision.

    4. Consultation Process:

  4. Children with widely varying experiences and communication skills require different consultation processes and techniques which need to be adapted to meet children’s different needs. Parents of all the children and young people involved gave their permission for them to be consulted about the services they receive. Some parents, particularly those whose children use Chilterns, felt they did not want their children to take part. They expressed concern that their children’s responses could be led or manipulated by staff in order to support the proposals for service re-design which they, as parents, did not believe were in their children’s best interests. The Chatterbox Project, which works with children in the South and Vale area of the county, also declined to take part. They commented that they felt the timescales involved in the children’s consultation were too tight. In particular, they suggested someone should be appointed to monitor the interviews and to ensure that the research was carried out in an unbiased way. The timescales were acknowledged by all concerned in the consultation to be tight and this is why this formal report has been delayed. It is not possible to rush children with complex communication needs, neither is it possible to "interview" most of them formally. Many of the best opportunities for consulting in these circumstances have to be seized on when the children feel ready to communicate their views: one Barnado’s Manager talked about how some of their most fruitful discussions took place in the minibus when the children did not need to make eye contact and when they did not feel the spotlight on them was too bright. It was not possible to consider using an independent monitor for these reasons.

  5. The three Barnardo’s Resource Centres look after children with a diverse range of profound and severe disabilities. They have restricted life choices, opportunities and experiences outside their families and the limited and exclusive ‘disability’ services. This means while they can comment positively and negatively about their experiences of these specialist services, it is often hard for them to conceptualise alternatives outside their everyday experience.

  6. A working group of staff with input from parents planned the consultations. This took place over a 6-week period during September and October 2002. Children were consulted by staff whom they knew. It was accepted that this could lead to bias but the positives of having staff who were familiar with the children and with whom they communicated was felt to justify this approach. 39 children were consulted; they were aged between 8 and 17. The consultation took place in the centres and on outings away from the centres. The work was done through:

    • Play / activities

    • Talking with children using their own particular means of communication, e.g. Signing

    • Art work / cutting out / sticking

    • Observations and interpretation of children’s behaviours / gestures / body language / demeanour

    • Photographic diaries

  1. The Oxfordshire Learning Disability NHS Trust undertook a sibling consultation with children whose brother or sister attends Hernes House. The children consulted were aged between 8 and 13 and their siblings had profound learning difficulties and complex health needs. The main consultation took place during an outing to a bowling alley and was followed by a meal of burger, chips and coke!

  2. The Oxfordshire Community Project is a play project run by the County Council and is one of the services which is proposed to transfer to Barnardo’s management. It runs services for between 60 and 70 children in the Bicester / Thame / Chinnor area, 30 of whom are currently receiving weekly term time provision with the rest accessing the service in the holidays. It caters for children and teenagers with moderate to severe learning disabilities: some use resources centres but the majority do not; most have challenging behaviour and many have failed in their attempts to access mainstream play services. The project supports children into mainstream provision if this is felt to be helpful but the aim of the project is to work at the child / young person’s own pace. Some young people who access integrated education choose to attend the project’s activities because they have felt isolated or been bullied in mainstream provision. Consultations with children is integral to the project and is part of an on-going process: many children can communicate verbally and have become more confident in expressing their views.

  3. Children and young people, including siblings, were also consulted by The Children’s Society at their Western Corner Project in Witney. There children have a wide range of special needs: some children who attend Western Corner also attend resource centres but others, like children attending the Oxfordshire Community Project, only use community services. As with other projects cited above, a range of techniques were used in undertaking the consultations. They also made imaginative use of drama to help children and young people express their views (See Appendix 1 – Western Corner’s Ask Us Experience). A report on their consultation has been prepared by the Children’s Society on a separate document See Appendix 2.

    4. Outcomes: What Children Said

  4. Many of the children who attend the Resource Centres cannot express their views verbally; much of the following is based on gestures and behaviour and this has relied on interpretation which is based on staff observations. The following are quotations from those children who can verbally express their views:

    5. "like coming to Summerfields"

    "I like sleeping at Summerfields"

    "This (Sycamore) is a splendid place"

    "Sycamore good, school disappear"

    "it’s (Sycamore) fun"

    "time away from parents"

    "best group (youth group at Sycamore) I’ve ever been in"

    "like to do puzzles, food, company and outings"

    "space hoppers are lovely"

  5. Some children, particularly teenagers, expressed the view that they enjoyed the opportunity to stay at a centre overnight with friends and one child commented about not having the ‘mickey taken’. One child said he "liked the beds", another ‘the walls’. Children stated preferences about which children they liked being with at the centre. One child said he did not want to come to a centre but to stay at home.

  6. It was the staff’s assessment that approximately 70% of the children enjoy meal times, bath times and bed times and that 30% experience some difficulties in these activities. Some children find meal times difficult for a number of reasons, including the noise sometimes caused by other children, the formality of sitting at a table and the number of people present. Children referred to their enjoyment of activities outside the centre: these included going to McDonalds, driving to the park and visiting various community facilities.

  7. Some of the more able young people made the following specific requests:

    • Teenage times so that they can go out in the evenings together

    • A larger sofa in the lounge so that they could lie down to watch TV

    • A people carrier – they did not like the ‘special’ minibus.

  1. The children in the sibling group at Hernes House were definite in their thoughts regarding the benefit of respite care. They were aware of the benefit it gave to their parents: "Mummy has a break", "It gives Mum and Dad a break early in the morning and at night". They also talked about the benefits for themselves: "I can have friends to sleep over", "I don’t have to keep changing videos all the time". Many of the children who attend Hernes have physical disabilities which make it difficult for the family to follow activities which able bodied children can enjoy: siblings talked about respite giving them the chance to broaden their range of activities: "we went and stayed out in the camper van", "we went to Disneyland Paris last year".

  2. All the children consulted were keen to state that their brother or sister was an integral member of their family. They were positive about the benefits for the child who attends Hernes for respite: "He has friends and has lots of things to do, such as the Jacuzzi and sensory room" and "at home he spends time in his bedroom, at Hernes there are lots of chances to do different things".

  3. The children and young people who attend the Oxfordshire Community Project were similarly positive about the service they receive through the Project. They identified what made the community services important to them:

    • To have something that is important to me

    • To meet regularly with friends

    • Continuity of the same staff

    • Feeling valued and succeeding in an activity

    • Walking to a club without your Mum or Dad

    • Having fun

    • Being away from home – but not for too long

    • Going to places I’ve not been to with my family

    • Feeling safe

Conclusions:

  1. Attending a Resource Centre is a positive experience for many children, but a small number may choose not to attend. Family circumstances, the lack of other suitable resources, the aim of keeping children living with their families and the child’s complex needs sometimes compromise the child’s wishes.

  2. Children and young people are all very keen to participate in a wide range of community activities and are articulate about what they like.

  3. Children whose disabled brothers and sisters attend respite centres regard the experience as positive for everyone. They want their brother or sister to enjoy the experience and feel supported when this happens.

  4. Staff involved in these different consultations see the work they have done so far as part of an ongoing process. They are committed to ensuring that the voices of disabled children and their brothers and sisters are heard. SCF’s Children’s Rights project intends to work with practitioners across a wide range of statutory and voluntary services in 2003 to enhance their capacity to help disabled children participate in planning and influencing services in conjunction with the Council. They also plan to run self-advocacy groups with 3 different groups of children and young people in 2003; one will be a group of young people who use community services, one a group of children in full-time / shared care and the third a group of children and young people in the far south of the county. Permission will be sought well in advance from parents whose children might attend so that they can be reassured about the aims of the group and how they will be run

CHARLES WADDICOR
Director of Social & Health Care

Background Papers: Nil

Contact Officer: Phil Hodgson, Tel: (01865) 815833

November 2002

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