Every Child Matters? Disabled children not included

All statutory services are being measured against the Every Child Matters (ECM) agenda. New research on what disabled children and their parents wish to achieve from service provision suggests that ECM does not take proper account of their wishes

Priorities and Perceptions of Disabled Children and Young People and their Parents Regarding Outcomes from Support Services (for further details see p9) is essential reading for anyone who provides to children who are disabled or who have learning difficulties. It puts the issues for disabled pupils and their parents very clearly in perspective and will prove a useful tool in looking at how schools and services can interpret the ECM agenda. The five expected outcomes described by ECM (stay safe, enjoy and achieve, make a positive contribution and achieve economic wellbeing) are difficult to interpret in respect of disabled children. This research explored the views of children and their parents from four diverse groups for whom the achievement of the ECM outcomes as currently defined may be seen as problematic: children with complex health care needs (CHN); children who do not communicate using speech (NS); children with autistic spectrum disorders (ASD) and children with degenerative conditions (DC).

Key findings from the study

• Disabled children aspired to the same sort of outcomes as non-disabled children. However, what these outcomes meant, the way they were prioritised, and the level of achievement expected, often differed from non-disabled children.
• Outcomes in certain areas of children’s lives – physical and emotional wellbeing, communication and safety – were seen as fundamental and needed to be addressed before other outcomes could be achieved.
• Children and parents identified outcomes in areas of the children’s lives they wanted to progress and also areas where they wanted to maintain the existing situation.
• There is a need to widen definitions of key concepts within the ECM framework to take account of disabled children’s views and capabilities.

The research found that definitions of key concepts given in ECM need widening to take account of disabled children’s views and capabilities, instead of trying to fit the needs of disabled children into a framework that at present does not acknowledge their needs. For example, full independence and making an economic contribution is not something some of the children in the study can achieve. However, that does not necessarily indicate a poor outcome for that child; achievements need to be seen and celebrated within the context of the child’s abilities and potential. In addition, the study points out that it is important that an outcomes framework recognises that, sometimes, the goal is not progress but maintaining a particular level of physical functioning or ensuring a child can continue enjoying treasured aspects of their everyday lives. The ECM outcomes are interrelated. However, in respect of disabled children the relationship between outcomes is stronger and the strong interdependence between outcomes indicates that particular attention should be paid to fundamental outcomes. For instance, communication is important throughout the age range for many disabled children. Maximising a child’s communication ability, and other people’s ability to understand the child’s communication, opens doors to opportunities to socialise and be active. The interrelationships between the different outcomes highlight the need for multi-agency partnership in services. Areas such as friendship, skills acquisition and opportunities to make choices do not take place in one particular context. Thus the support needed to help a child achieve these sorts of outcomes needs to be provided in many contexts. In addition, failing to address one outcome can impact on other outcomes in different areas of the child’s life. For example, inaccessible environments and lack of equipment to support a child’s mobility were frequently mentioned as barriers to socialising, being active, learning skills and promoting independence. The research identified and distinguished between fundamental outcomes and higher-level outcomes, stressing the need to achieve basic requirements before other higher-level outcomes could be achieved. Fundamental outcomes:

• physical and emotional wellbeing
• communication
• personal safety.

Higher-level outcomes:

• enjoying and achieving
• making a positive contribution
• economic wellbeing.

Fundamental outcomes

Be healthy

• For many children, being comfortable and not in pain was central to achievement of any other outcomes.
• Maintaining health and functioning was also important and could be threatened by difficulties experienced in using health services (ASD) and problems with supply and availability in different settings of equipment (CHN and NS).
• For children with DC there was a tension between maintaining physical health and abilities against quality of life.
• Emotional wellbeing was a key concern for parents of children with ASD, many of whom found it difficult to assess their child’s emotional state.
• For children with degenerative conditions, especially those who were able to understand the changes in their health and abilities, emotional support was needed for coping with these changes.
• Parents stressed the importance of meeting children with DC’s emotional needs in the end stage, particularly to ensure the child did not feel anxious or abandoned.

Being able to communicate

• Children and parents highlighted the importance of other people who had regular contact with the child (including parents and siblings, teachers, hospital staff, carers and peers) having the knowledge and skills to understand the child’s means of communication.
• Having the ability to communicate was seen as opening doors to more opportunities, such as socialising, being active and becoming more independent, which in turn help promote a child’s feeling of security and self-esteem.

Keeping children safe

• Parents reported the need to ensure their children were safe from exploitation, abusive relationships or physical danger, and the difficulties this poses when children receive care from a number of people, cannot communicate well or lack any sense of danger, was emphasised.
• Staying safe was also talked about in terms of preventing the child having accidents. There were different reasons why children might be vulnerable to accidents including using inappropriate or unsafe equipment, living in unsuitable housing and/or requiring high levels of supervision.

Higher-level outcomes

Enjoying and achieving – encompassing various interrelated areas:

Socialising and having friends

• Having friends was a priority for many children and their parents. However some parents of children with ASD recognised that to have friends their children would first need to have the desire to interact.
• The lack of contact with school friends out of school was seen as a barrier to achieving friendship across all groups, and was a source of considerable frustration for some children.

Activities and experiences

• Having interests and being able to participate in activities was something all parents wanted for their child.
• Many were concerned that their child’s ‘world’ was restricted to home and school and they wanted their child to have greater variety and opportunities.
• Most parents expressed the desire for their children to participate in mainstream activities in their local community.
• The exception was some parents of children with DC who reported their children were no longer able to cope with such situations.
• The lack of accessible or appropriate facilities and/or the lack of support to assist the child meant that taking part in mainstream activities was often very difficult.

Education and learning

• Parents’ aspirations for their child’s education varied according to the severity of the condition and associated learning difficulties.
• All parents wanted their child to fulfil their learning potential. For those with limited cognitive abilities, acquiring self-care and living skills and enjoying a stimulating environment was often prioritised over academic achievements. However, for children with greater cognitive abilities, parents wanted their child to at least achieve basic skills such as reading, writing and number skills.
• Children with complex health conditions did not want their school work to be affected by having time off due to ill health or for treatments. Parents of children with DCs noted the need for educational goals to be appropriate and responsive to the decline in their abilities.

Self-care and life skills

• While for non-disabled children independence is often seen as the child being able to do something without help, for many disabled children, this is not achievable in certain areas of their lives.
• Managing self-care tasks as independently as possible, with or without support, was a key priority among many children and parents across all groups.
• Independence was seen in terms of children reaching their potential in carrying out life skills with or without support.
• The life skills children wanted to acquire included being able to make snacks, go out alone, handle money and manage unforeseen circumstances when out and about.

Feeling loved, valued and respected

• Parents wanted their children to feel that they were loved and that what they wanted mattered and described ways of behaving that ensure that children feel valued:
  • Treating the child as an individual.
  • Involving the child in making decisions about his/her life.
  • Respecting the child’s privacy (in a way appropriate to their age).

Identity and self-esteem

• For many children feeling ‘normal’ was important and was linked to being accepted by their peer group.
• ‘Looking good’, wearing similar clothes to others and being able to use attractive equipment (boots, wheelchair etc) contributed to how they felt about themselves.
• Parents wanted services to be more sensitive to the child’s identity and social integration when issuing with equipment, making sure that it is attractive while still offering appropriate support.
• Parents also stressed the importance of the child experiencing success, and having their achievements recognised.

Making a positive contribution

Being part of the local community

• Having the same access to opportunities and activities as non-disabled children and being part of the local community was important to many children and parents across all groups. However, for children who attended special school, the location of the child’s school and the inaccessibility of local facilities often meant that children did not participate in local community-based activities.

Feeling involved and having the opportunity to exercise choices

• Being involved in decisions that affect their lives was important for many children and their parents. This ranged from choices about what to wear, how and where they spent their time, planning for the future and decisions about their care and treatments.

Economic wellbeing

• Having a job and earning money in adulthood was seen as important by young people with good cognitive ability and their parents.
• Employment opportunities and support, and access to transport were seen as key factors in achieving these outcomes.
• Parents of young people with more limited understanding wanted them to be meaningfully occupied and be able to contribute something when they become adults.
• Not all disabled children will be able to make an economic contribution and families with disabled children are more likely to be living in poverty than other families, so the presence of adequate levels of benefits is important.

Methods

Ninety-five families took part in the project representing a total of 100 children. Within each group (CHN, NS, ASD and DC) there were approximately equal numbers of children in three age bands (0-6yrs; 7-11yrs; 12-19yrs). Ninety mothers and 18 fathers participated, including seven bereaved parents in the DC group. Twenty-seven ‘other informants’ were interviewed. Twenty-nine children participated directly, and a further 12 teenagers with autistic spectrum disorders were observed in a therapeutic group setting discussing friendships and transition. Individual interviews and observation were used to obtain children’s views of their desired outcomes and parents’ desired outcomes for their children. Where it was not possible to engage children in ‘interviews’, researchers used observation of children, and interviews with other informants (eg teachers and care staff) to collect information from perspectives other than those of parents.

Further information

The research was funded by the Department of Health Policy Research Programme.

Copies of the full report, Beresford, B Rabiee, P and Sloper, P (2007) Priorities and Perceptions of Disabled Children and Young People and Their Parents Regarding Outcomes from Support Services, can be downloaded from the SPRU website.

There is also a downloadable summary entitled Outcomes for Disabled Children