The heartbreaking case of families with disabled children

18/10/2013  -  12.27

Dr Mahmoud Emira, Centre for Developmental and Applied Research in Education (CeDARE)

The heartbreaking case of families with disabled children

A recent Contact a Family survey of more than 400 families with disabled children provided disturbing results which highlights the lack of support inside schools.

To understand the gravity of the current situation it is important to note that these families already face dual challenges: challenges of caring for children with disability (e.g. families experience high levels of stress) and challenges to accessing support outside schools in the form of leisure activities or short breaks (Preece and Jordan, 2007).

Even though such respite care provision became a legal duty in April 2011, there are challenges, which may hinder access to short breaks such as families’ lack of trust in the service providers, staff attitude and lack of flexibility (Emira and Thompson, 2011). Evidence suggests that families might opt out altogether; only 5% of the over 31,000 families of disabled children surveyed by Hamlyn et al. (2010) used respite care/short breaks in 2009/10. This is not likely to tackle the families’ high level of stress.

According to the above survey findings, now these families and their children are even faced with more challenges to getting support inside schools, i.e. the type of support the law entitles to their children. Although a child can only be legally excluded from school for disciplinary reasons, families, in the above survey, indicated they had been asked to collect their child during the school day because of staff shortages.

If these additional challenges make it harder for families to work properly and even their children have health implications (increasing feeling of depression) as a result of lack of essential support, how could we expect them to cope with their daily routine? If such a heartbreaking situation might force these families one day to quit their job, how would that support the government’s scheme of getting people back to work?

The fact that these children are deprived from getting a proper education and linking with their friends at school raises questions about policies such as “Every Disabled Child Matters”. If families who need the most help are being neglected, who should be the government’s priority to get support?

As a temporary solution to the current situation, there might be a need for these schools to:

a) seek support from local voluntary and/or religious organisations in their community

b) network with other local schools with sufficient resources to offer help and

c) have wider consultation on how these children and families can be better supported.  

Dr. Mahmoud Emira