Having a break: good practice in short breaks for families with children who have complex health needs and disabilities

Why develop innovative models of short breaks?

Parents’ expectations of services have changed

In recent years, an increased awareness of human rights and equal opportunities has led parents of disabled children to expect more of health and social services. They now ask for their child to be provided with a more rewarding and stimulating experience, one that will further their child’s development and maximise their life chances.

At the same time, a stronger focus on consumer rights has encouraged parents to become more demanding. In the past, families did not have many expectations of services and regarded their child as their sole responsibility. Nowadays, families are much more willing to ask for the help they need.

Parents now tell us what they want. We don’t tell them what we can provide.

Staff member, Mid Essex PCT

The new service models are requested by parents and better meet their needs

The majority of the types of short breaks described in this resource have been developed in direct response to requests from parents. There is a huge demand for these kinds of services.

An evaluation day was organised several years ago and the Saturday play scheme came out of that. The Saturday scheme has grown out of the holiday scheme because parents requested it.

Staff member, The Hamlet Centre Trust

Our best value review in 2001 said that parents want these services. We can always justify service developments because we have built in consultation and evaluation with families

Staff member, Norfolk County Council

There is also evidence that these services are better at meeting families’ needs. Many of the service providers described in this resource are seeking funding to expand their services and ensure more equitable access.

Our home-based palliative care for terminally ill children was externally evaluated, which led to a decision to continue funding when the lottery grant ran out. This was a tremendous boost for the team. Now there is no limit on how long the service can be offered for and we work with the family to work out what will be most useful

Staff member, Mid Essex PCT

Our Saturday scheme is very popular and the commissioners are considering extending the scheme, with new money available nationally, for example Aiming High, because at present parents can only access the service once a month

Staff member, The Hamlet Centre Trust

New commissioning arrangements encourage innovation

The new commissioning arrangements offer much greater flexibility for commissioners. This will soon enable them to commission more imaginative and innovative services.

It’s a question of commissioners getting to know what’s needed … in future commissioners may want to use resources differently or initiate new services. This is not happening just yet, because the commissioning/provider split is still quite new

Staff member, Mid Essex PCT

There is a new commissioning world which we are getting into step with

Staff member, Norfolk County Council

Adapting to these changes will require new ways of thinking and further engagement of families in the commissioning process.

Commissioners need to be creative and it is more than thinking outside of a box, it is not seeing there being a box at all

Staff member, Rainbow Trust

We have stakeholders included in the commissioning process and on the commissioning group. It’s these stakeholders, including parents, who often tell us what to commission – and what not to!

Staff member, SHSSB