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A survey

Contact a Family's analysis of their 2003 survey, 'Relationships between Parents who have a Disabled Child: A survey of over 2,000 parents in the UK', revealed the following figures:


Problems experienced since having a disabled child % of those linking disabled child
76% stress or depression 88%
72% tiredness/lack of sleep 84%
51% financial difficulties 66%
32% problems at work 71%
22% housing problems 69%
10% domestic violence 55%
8% drug or alcohol problems 67%
8% none of the above
4% no response
Ten practical impacts of disability
Boy in chair with carer

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.

Financial hardship
Boy with walking support and carer

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).

Strained emotional relationships
Girl in chair with carer

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.

Restricted social life
Boy in chair with carer

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.

Higher stress levels

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)

Modifications to family activities and goals
Girl in chair with carer

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)

Time restrictions caused by care demands
Boy with walking support

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.
Sleep deprivation
Boy with walking support and carer

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.

Lack of baby-sitters
Girl in chair with carer

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.

Challenges in day-to-day life
Boy with walking support

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

References

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.

References

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.

References

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.

References

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.