From studies by Olssen and Hwang (2003), Runciman and McIntosh (2003) and Conway and O’Neill (2004), the ten following impacts of disability were identified:
1. Financial hardship
2. Strained emotional relationships
3. Restricted social life
4. Higher stress levels
5. Modifications to family activities and goals
6. Time restrictions caused by care demands
7. Sleep deprivation
8. Performing unpleasant procedures
9. Lack of baby-sitters
10. Challenges in day-to-day life
The following slides expand on some of these.
Having a disabled
child can also mean that parents find it harder to maintain full-time employment,
their housing can be inadequate for their child's needs and expenditure on basic needs
is increased.
The Prime Minister's Strategy Unit (2005) (p102)
In the Child Poverty Review (HM Treasury, 2004), it was found that 55 per cent of families with a disabled child live, or have lived, in poverty, and it is estimated that the cost of bringing up a disabled child is three times that for a non-disabled child (Gordon et al, 2000; Russell, 2005; Wooley, 2004).
Caring for a disabled child can cause relationship problems. According to one study, 31% of couples report some problems, 13% cite major problems and 9% actually separate. Stress, depression and lack of sleep are other commonly experienced problems (Contact a Family, 2011).
For further information, read:
Contact a Family (2009a) Relationships and Caring for a Disabled Child.
London: CAF.
In the Contact a Family report, What Makes My Family Stronger (2009b), families reported having a lack of a social life and leisure opportunities. This was due to financial shortcomings and feelings of exclusion in terms of physical opportunities but also other peoples' attitudes.
The severity
of the child's disorder, at any level, can leave parents exhausted to a degree that
is dependent on their stress tolerance. Many of them experience chronic pessimism
and risk breakdowns in their functioning. Early intervention should seek to divert
this bleak outcome. It should seek it vigorously and with great endeavour.
Randall and Parker (1999) (p121)
Contact a Family (2009b) found that 'the demands of caring leaves very little time for each other and couples sometimes lead separate social lives because whilst one is caring, the other is snatching a couple of hours rest or time with other children.' (What makes my family stronger, p13)
The Mencap survey (2001), No Ordinary Life, revealed startling facts in relation to caring for a child with profound and multiple learning difficulties.
- 60 per cent of parents spent more than 10 hours per day on basic physical care.
- Parents were woken on average three times per night.
- 48 per cent received no support from outside the family to help with their care tasks.
My basic needs
are not being met - I don't get a good night sleep as my disabled child needs to be
looked after during the night.
Contact a Family, 2009
The Mencap survey (2001), No Ordinary Life, revealed that parents caring for a child with profound and multiple learning difficulties were woken on average three times per night.
Contact a Family (2006) notes that suitable baby-sitters and other forms of informal support are harder to find when your child has a disability.
Researchers for the Foundation for People with Learning Disabilities' 'First Impressions' project (2005) interviewed 22 parents of disabled children and asked them to describe the challenges which faced them in negotiating day-to-day life. They found that:
Finding a suitable parking space
and an appropriate shopping trolley, using public transport and sourcing a strong
enough buggy when the child outgrows their pushchair, all create stress. Public transport
is particularly inaccessible for disabled children and adults.
First impressions project, 2005
Contact a Family (2003) No Time For Us: Relationships between Parents who have a Disabled Child: A survey of over 2,000 parents in the UK, London, CAF.
Contact a Family (2006) About families with disabled children - UK, London: CAF.
Contact a Family (2009a) Relationships and Caring for a Disabled Child, London: CAF.
Contact a Family (2009b) What Makes My Family Stronger: A report into what makes families with disabled children stronger - socially, emotionally and practically, London: Contact a Family.
Contact a Family (2011) Statistics: Information about families with disabled children.
Foundation for People with Learning Disabilities (FPLD) (2005) First Impressions: Emotional and practical support for families of a young child with a learning disability. A guide for practitioners and service commissioners, London: Mental Health Foundation.
Conway, S. and O’Neill, K. (2004) Home and away, Learning Disability Practice, 7, 34-8.
Gordon, D., Parker, R., Loughran, F. and Heslop, P. (2000) Disabled Children in Britain: A reanalysis of the KOPCS disability surveys, London: The Stationery Office.
HM Treasury (2004) Child Poverty Review, Norwich: HMSO.
Mencap (2001) No Ordinary Life: The support needs of families caring for children with profound and multiple learning disabilities, London: Mencap Publications.
Olssen, M.B. and Hwang, P.C. (2003) Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example, Journal of Intellectual Disability Research, 47 (4/5), 328-341.
Prime Minister's Strategy Unit (2005) Improving the Life Chances of Disabled People, London: Strategy Unit.
Randall, P. and Parker, J. (1999) Supporting the Families of Children with Autism, Chichester: John Wiley.
Russell, F. (2005) 'Starting school: the importance of parents' expectations', Journal of Research in Special Educational Needs, 5 (3), 118-126.
Runciman, P. and McIntosh, J. (2003) Evaluation of the PATCH nursing service: partnership and training supporting children with complex needs at home, Primary Health Care Research and Development, 4, 307-318.
Wooley, M. (2004) How do they manage? Income and expenditure of families with severely disabled children, York: Family Fund.