What is the issue?
In the past ten years, the prevalence of severe disability and complex needs has risen. This is due to a number of factors, including increased survival of pre-term babies and increased survival of children after severe trauma or illness.
- There are up to 6,000 children living at home who are dependent on assistive technology.
- Children and young people with life-limiting conditions, such as cystic fibrosis, have better life expectancy and improved quality of life, due to improved treatment and support.
- The number of children identified with autistic spectrum disorders has risen over the last ten years.
Basic care needs
A third of parents with a severely disabled child under two years old use more than three pieces of equipment daily to provide basic care. Four out of five severely disabled children, aged 12-14, need help with self-care, e.g. eating, washing, dressing, going to the toilet.
Day-to-day stress
Families with disabled children often face high levels of day-to-day stress, and many have high levels of unmet need for health services. Children's behaviour and sleep problems are key factors in parental stress. Many parents report difficulties accessing short breaks funded by the NHS.
What is the government doing about it?
The National Service Framework for Children, sets out standards for health services for children. Standard 8 is specifically about disabled children.
Priority group for the NHS
Disabled children have been included as one of four local priority groups for service improvement in the NHS, through the operating framework announced in December 2007. This is the first time that disabled children have been a priority group for the NHS.
More short breaks
As part of the Government’s review of services for disabled children 'Aiming High for Disabled Children' the Department of Health has provided additional short break funding to Primary Care Trusts.
National Carers Strategy
The Government is also currently reviewing the National Carers Strategy, which covers all carers, including parent carers.
What is Contact a Family doing about this?
- working with the Ministerial Implementation Group for 'Aiming High for Disabled Children' to help the Government develop childcare and short breaks which include children with complex health needs
- working with the Department of Health on the review of the National Carers Strategy to make sure that children’s issues are taken into account – in particular that there is good health information for families.
- producing information about how families can use the National Service Framework to lobby for better services. See our Making a Difference booklet.
- working with the Every Disabled Child Matters campaign to persuade Primary Care Trusts to make a commitment to disabled children. Find out if your local Trust has signed up.
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