Title: On Holiday! Policy and provision for disabled children and their families
Authors: Professor Pat Petrie, Abigail Knight, Maria Zuurmond, Patricia Potts
Institutions: Thomas Coram Research Unit, Institute of Education, University of London
Title: Everybody here? Play and leisure for disabled children and young people
Authors: Pauline Shelley
Institution: Contact a Family
The studies reviewed here show that disabled children still experience social disadvantage and exclusion during out-of-school periods. This article suggests that, in order to promote their social inclusion, local authorities need to show political commitment to the rights and entitlements of disabled children to inclusive service provision, matched with sufficient funding to ensure that the rhetoric is also a reality.
In the past 10 years, there have been many government initiatives that aim to promote the social inclusion of disabled children and young people. These initiatives include the Department of Health’s Quality Protects programme, which sought to address the inequalities that disabled children and their families experience and emphasised the inclusion of disabled children in mainstream services, including leisure.
The Disability Discrimination Acts of 1995 and 2005 boosted disabled people’s access to mainstream services, including education, care and leisure. More recent government policies have also emphasised the need to improve the quality of disabled children’s lives in general by including them in mainstream activities. This impetus towards inclusion can be seen in policies such as Valuing People (Department of Health, 2001), the National Service Framework for Children, Young People and Maternity Services (Department of Health, 2004) and the Prime Minister’s Strategy Unit report of 2005, Improving the Life Chances of Disabled People.
But research shows that disabled children and their families are still experiencing severe social and economic disadvantage and are often socially excluded from mainstream society and services. The two research studies being reviewed in this article both focused on the social inclusion of disabled children and their families. The more specific aims and objectives of the studies and the methods they used are as follows.
Study 1: The On Holiday! study’s main aim was to understand how holidays and other out-of-school times might contribute to the social inclusion of disabled children and their families, or do the opposite. Using a case study approach, interviews were carried out with 121 staff and 90 parents across six local authorities. The views and perspectives of 86 disabled children and young people were also elicited.
Study 2: The focus of the Everybody Here? research study was to find out from the parents of disabled children about the difficulties they faced when using leisure and play services for their son or daughter. To do this, a survey was carried out with 1,085 parents.
Although many of the disabled children who took part in the On Holiday! study were positive about the school holidays, boredom was a problem for some. About half of the children attended a holiday play scheme for a few days, which on the whole, they enjoyed. Some children, however, experienced problems in physically accessing mainstream facilities and would have liked greater understanding of their needs on the part of staff and peers. The importance of friendships was central to many young people’s descriptions of the holidays, and whether they enjoyed the holidays was largely dependent on how much they were able to see their friends. Many young people experienced high levels of social isolation during the holidays, especially if they attended schools, such as special units, outside their local area and were unable to meet up with their friends outside school.
Almost all of the parents described difficult times during the school holidays, many using the term “nightmare” when referring to school holidays and “relief” when term started again. The lack of routine and the unpredictability of the holidays were very challenging, as was the inability to carry out practical, day-to-day tasks, such as shopping. Many parents talked about not being able to do “ordinary” activities with their disabled child like going to the park or to the cinema. They often experienced disrespectful attitudes and a lack of understanding from members of the public. As a parent of a 13-year-old boy commented: “In the summer holiday we just can’t access normal life”.
Going away on holiday with a disabled child was also seen as stressful for many families, who, as a result, were likely to opt for day trips, although these could also be challenging. Parents often described the difficulty of juggling the needs of their disabled child with those of other children, and turning to relatives and friends for help could pose problems. Overall most parents felt very socially isolated and unsupported during holiday periods.
Parents of children who had received a diagnosis of an autistic spectrum or an attention deficit hyperactivity disorder faced particular challenges in accessing play schemes and mainstream leisure and play facilities. The study also revealed a shortage of appropriate holiday clubs and play schemes, which resulted in the rationing and irregularity of service uptake. Provision was found to be especially lacking for young disabled people over the age of 12 and for working parents, seeking to cover their own working hours.
These sorts of experiences were also described by many of the parents who took part in the Everybody Here? survey. Most parents (68%) said that they did not use leisure facilities because their family or child was made to feel uncomfortable. An even greater number (73%) of parents said they had decided not to go on outings because their child could not cope with long queues those with children with communication disorders such as autism were the most put off by queues. Finding accessible leisure facilities, such as disabled parking and accessible changing facilities, was a problem for 55% of parents and like the On Holiday! study, activities and facilities for over 12s was a particular gap in provision.
The studies also found many examples of families being supported in the out-of-school periods. The On Holiday! study emphasised the importance of play schemes, short breaks, effective social work support and the involvement of a “bridging” professional, linking the family with mainstream and specialist out-of-school activities. Parents reported that a safe environment, staff continuity and children’s familiarity with the setting were particularly desirable in holiday provision. Specific examples of positive practice included the sharing of special equipment between a primary school and a play scheme, close links between a school and a mainstream leisure and sports facility. The study also revealed “buddying” or befriending schemes that enabled young people to attend mainstream leisure activities with another (usually non-disabled) young person.
Both studies found examples of local authorities demonstrating their commitment to inclusive practice by employing, or funding, inclusion workers to promote and develop the inclusion of disabled children in mainstream out-of-school services. The On Holiday! study found that the highest levels of inclusive opportunities for disabled children were in local authority areas where there was a political commitment from local authority council members and from officers, to the rights and entitlements of disabled children. This commitment had to go beyond policy statements and be matched with sufficient funding to make inclusive provision something of a reality.
Although many recent government policies have emphasised the social inclusion of disabled children and their families, research shows that the families often face social isolation and social exclusion, particularly during out-of-school times. The two studies reviewed here have revealed families experiencing negative attitudes towards them when using leisure and play facilities and a shortage of appropriate and accessible information and services. Effective provision for the social inclusion of disabled children and their families requires a political will to do something about exclusion and a commitment best demonstrated by the allocation of human, institutional and financial resources.
LINKS AND RESOURCES
* Every Disabled Child Matters campaign, hosted by the Council for Disabled Children
* Aiming High for Disabled Children: Better Support for Families (2007) HM Treasury and DfES.