Support for families with disabled children

This review looked at the support available for families with children that have a disability.

This review focused on families that have children under the age of 19 with:

• a learning disability
• autism or Autistic Spectrum Disorders
• communication needs
• sensory needs
• mental health and behavioural support
• mobility needs
• technology dependence

In particular, this review looked at:

• The availability of specialist health services for disabled children and young people and their families.
• An assessment of the quality of support in a geographical area linked to primary care trusts (PCTs).
• The ‘building blocks’ of the care pathway that are of particular importance to families.

Findings

The review presents the views and experiences of disabled children and their families as well as survey data from commissioners and acute hospitals about services provided from September 2009 to September 2010.

Our findings included:

• Families felt access to and involvement in services was a challenge and that they waited too long for access to services and for initial diagnosis.
• Contributors felt services were not joined up and that different services did not work well together.
• Many disabled children and their families also reported they had not been consulted on how their care had been provided.

We found significant disparity between the experiences of disabled children and their families, which were overwhelmingly negative compared to the data supplied by primary care trusts, which showed high levels of access and user-centred care.

You can read our key findings relating to health care services for disabled children and young people in our national report, which is also available in easy to read format.

We collected data from all PCTs and selected acute trusts. PCTs were also required to obtain data from providers in some cases.

You can find out about our findings for your local PCT in our A-Z of disabled children reports or our A-Z of disabled children reports (easy to read versions).

You can also download the full data sets for both acute trusts and PCTs below.

Method

Data was collected from all PCTs and relevant acute trusts between 7 January and 14 February 2011 and all organisations had the opportunity to ratify their submitted data from 18 May to 8 June 2011.

You can download the questionnaires we used for both PCTs and acute trusts. The acute trust tool drew on a number of case studies of the care received by children and young people while the PCT tool focused on the provision of services in the area where the PCT was the commissioning body.

You can find out answers to frequently asked questions about our data collection in the document below.

Health care for disabled children: Data collection FAQs

Find out more

For more information on the review, you can email us at enquiries@cqc.org.uk.