Review of ‘Support for families with disabled children’ 2009/10

UPDATE July 2010

The timing of some of our reviews has being reconsidered in order to allow CQC to complete its programme of work to register adult social care and independent healthcare providers. This review is not affected and will progress as planned.

What is this review about?

This review looks at support for families with disabled children and will:

look at delivery and commissioning of specialist health services for families with disabled children (and to a lesser extent, if feasible, adult social care support for these families)
include an assessment of the quality of support in a geographical area linked to PCTs
look at the ‘building blocks’ of the care pathway which are of particular importance to families

Key themes and questions

Families and disabled children and young people are clear about what ‘quality’ means for them.

Having the support they need, when they need it:

having a range of support to meet specialised needs
carers and siblings have support for their own needs
having acceptable experiences of waiting for support

Pathways are managed to support their needs:

experiencing co-ordinated support
experiencing a managed pathway between acute and community support
young people’s transition to adult services is supported

Families and children and young people are empowered:

they are involved and can influence their support
they have the right information about support
they have choices about the support that is available and how it is arranged to meet their needs

Families and children and young people are equal and included:

reasonable adjustments are made to support them
skills meet the needs of families and children and young people
support promotes equality and inclusion for families and children and young people

Needs and support within the scope of this review

Families with disabled children aged between 0 and 19 years of age, with ongoing needs for specialist health support.

Their range of needs may include:

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

(or any combination of these)

Support outside the scope of this review

Primary care and health promotion
Midwifery and neonatal services
Safeguarding and Looked After Children arrangements
Palliative care (beyond regular short breaks)
Disabled children and young people living in special residential settings
Children and young people's services lead by the local authority

Which organisations and services will we be looking at?

The organisations and services that will be involved in this review are acute trusts, PCTs and community health services.

Method

This review will develop a new national assessment. The assessment framework will be based on existing national data as far as possible. To provide a more comprehensive picture of performance, we will see if it is possible to develop some bespoke ‘tools’ which would provide important new data.

Results will be published and fed back to local areas. We will work with the poorest-performing areas, focusing on problem-solving and action-planning. We hope that local partners will join this process.

We will work with family support organisations to ensure that local families participate in this action planning in a meaningful way.

What are the key dates for the review?

October 2009 - March 2010	Develop and test the assessment framework
April - July 2010	Collect national and existing data
Autumn 2010	Collect bespoke data from all relevant organisations (dates tbc)
Winter 2010	Publish local results
Winter 2010	Publish national report and other national outputs
late Autumn 2010	Plan improvement work with poorest performers

Where can I get more information?

Read our update on where the review is now and what else is coming soon.

Support for Families with Disabled Children Update January 2010 (PDF, 65KB, opens in new window)

For more information please contact us at: reviews.studies@cqc.org.uk.