Beyond ‘ordinary’ parenting; supporting parents of disabled children
A key group of parents and families that often get over looked are those with disabled children. Parents with disabled children face a unique combination of emotional, social, physical and financial pressures that can impact on the stability of family life For many this can mean they find it difficult to take part in daily activities and can become very isolated and feel unable to cope.
People providing high levels of care are twice as likely to be affected by poor health as those without caring responsibilities.[i]Families face discrimination associated with caring for a disabled child, almost 70% of respondents to our survey What makes my family stronger (May 2009) said their experience of understanding and acceptance of disability from their community was poor or unsatisfactory.
Quite apart from the emotional and physical pressures involved in caring for a disabled child, families face two specific financial challenges that are additional to those faced by all families. Firstly they incur considerable extra and ongoing costs in caring for their child - it costs three times more to raise a disabled child[ii]. Families with disabled children also face specific difficulties in sustaining employment due to the demands of juggling work and caring - just 16 per cent of mothers with disabled children work, compared with 61 percent of mothers with non-disabled children[iii]. Consequently, families with disabled children are at greater risk of living in poverty[iv]. Our report Counting the Costs 2010 revealed that families with disabled children are going without essentials - almost a quarter are going without heating and one in seven are going without food.
Parent carers have also identified the following as causing strain their ability to parent effectively:
- struggling to come to terms with the news of a child's disability; or practitioners not acting on their concerns about their childs development.
- a lack of time for themselves, each other and other children.
- little opportunity to enjoy play and leisure as a family.
- a lack of support and understanding from professionals such as GPs.
- access to suitable services; and having to fight for those that are available.
It is clear is that parenting a disabled child goes beyond ‘ordinary’ parenting. Too often parents spend too much time doing caring tasks and dealing with a web of interdependent and often uncoordinated services leaving them with a lack of quality time for parenting and doing the things other families take for granted - almost three quarters (73%) are going without days out and leisure time[v].
UK research has shown unequivocally that parental involvement in education contributes significantly to children’s achievement. Therefore, due to the unique combination of pressures on parent carers we must also consider the negative impact on the home learning environment for disabled children and the risk of them therefore reaching their full potential.The Government will shortly begin piloting in some areas an offer of voluntary parenting classes for every parent of a child under 5, which is in direct response to the evidence that the home learning environment is the biggest single determinant of a child’s future success.
However what do we know about the impact of parenting classes on families with disabled children?
“I’m struggling with my local social services and my GP.They say my daughter doesn’t have a disability it’s bad parenting and are forcing us to do a triple p parenting course, this makes me feel really angry that my concerns aren’t being taken seriously by people that are meant to be the professionals.”
“When my child was diagnosed with autism and ADHD I attended a parenting course, the strategies that were highlighted did not work with my child as it did not take account of my child's particular needs.I found attendance on the course frustrating, the course trainer and other parents on the course made me feel like I was a failure ”.
These quotes illustrate the potential negative impact on parents with disabled children. We regularly hear from parents that they felt that their parenting skills were being judged negatively especially for those parents that have tried many of the strategies prior to attendance but were not believed to be 'doing it' right. This leaves many parents who are already struggle to come to terms with their childs disability distrustful of professionals and further adds to feelings of isolation and low self esteem.
Our feedback reveals that parents that benefit most from parenting classes are those that have received support targeted at families with disabled children, which is led by parents in similar situations and is individualised to support and understand the disability and associated behaviours.
“I like parenting support that is focused on families with disabled children based on particular themes such as sleep, feeding, toileting”.
“The parenting class looked at what my child could achieve and set goals to reflect her learning needs. It also worked with my daughter to help her own understanding of her condition”.
“After receiving a diagnosis I was really anxious, I felt like I was no longer sure how to interact with my baby, speaking to other parents in similar situations really helped”.
In summary, parent programmes should offer support and information that helps families with disabled children to:
- Come to terms with understanding how the condition will affect their child
- Understand why it has happened and perhaps stop blaming them self
- Adjust expectations, for themselves as well as their child whilst celebrating their individual achievements.
- Looks at alternative responses and strategies that can help.
- Take control and plan their future
What is clear from the feedback Contact a Family has received from families with disabled children is that delivering parenting support using the social model of disability is key in building family resilience and helping parents plan long-term for their children so they can reach their full potential.Unfortunately, this is something that is not routinely considered in parenting programmes and can indeed add to parental stress and isolation when advice is given by people that don’t understand specific conditions or behaviours and the unique challenged faced by families with disabled children.
A targeted and co-ordinated policy approach across government departments is required that considers the unique combination of interdependent pressures placed on families with disabled children.
[i] Carers UK, 2004
[ii] Paying to Care: the costs of childhood disability by Barbara Dobson and Sue Middleton
[iii] Langerman, C. & Worrall, E. (2005), Ordinary Lives –Disabled children and their families, London: New Philanthropy Capital
[iv] Department of Work and Pensions 2006/07 Households Below Average Income showed the risk of relative poverty for families with a disabled child but no disabled adult family member has increased from 20% to 25%, meaning disabled children are now at greater risk of living in relative poverty than non-disabled children.
[v] Contact a Family (2010) Counting the Costs: The financial reality for families with disabled children
