The disabled children we work with have told us that all they want is to have the same opportunities in life as their peers. These young people still face many barriers to enjoying their rights and to accessing services they need.

The new report published by the Care Quality Commission, Health care for disabled children and young people is a review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England.

The report highlights how many families with disabled children still have to fight to ensure adequate services for their children.

Two differing views of care

The report comes at a time when the health care system is undergoing drastic changes which have stirred a lot of debate among health professionals, legislators and the public. The report paints two quite different pictures.

Primary care trusts (PCTs) see the services they provide to disabled children as their families as accessible and user-centred.

However, disabled young people and their families describe negative experiences of long waits for diagnosis and health care, disjointed services and a lack of information and involvement in the planning of services. The time taken for families to get a diagnosis, for example, had ranged from three months to up to 15 years, with an average wait of up to five years.

Questions of how well services meet disabled children's needs

The report raises a question of how well the services commissioned are able to meet the needs of the local population of disabled children and their families. There appears to be a lack of awareness of the level of needs locally.

Five PCTs claim that no disabled children and young people live in their area, and 55 PCTs do not monitor whether services allocated as a result of Common Assessment Framework were delivered. In addition, many PCTs could not provide data on referrals and waiting time for specialist services.

The report also highlights the lack of a voice for families of disabled children and disabled children themselves in informing the service delivery. It suggests that disabled children and young people are not consulted about their care, or able to choose who provides this care, and many are not familiar with the concept of complaining.

The findings from this report raise many concerns. They do not come as a surprise though as disabled children and young people involved in our projects have shared similar experiences with us.

What our government can do

We believe that the failings of the current system in relation to meeting the needs of disabled children and young people and their families can be addressed through the reforms of the health care system and the way the proposals outlined in the green paper on the Special educational needs and disabilities are taken forward.

We urge the government to establish clear lines of responsibility and accountability for commissioning and delivering of services for disabled children and their families. Training and data collection at the local level need to improve to ensure that commissioning budgets reflect local needs and that vulnerable groups of children do not fall through the gaps in service provision.

We believe that the needs, experiences of disabled children and their families should be at the centre of the new system and that independent advocacy should be provided if a child needs support to participate in the decisions about his life and care. The principle ‘no decisions about me, without me’ which was outlined in the Department of Health's Equity and excellence white paper, should underpin the commissioning and delivery of services for disabled children.

By Iryna Pona, Policy Adviser

By Iryna Pona - Policy Adviser
Iryna Pona
- Policy team

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