Family Leadership

The fundamental principle on which personalisation is based is that disabled children, young people and their families have the authority to lead their lives with as much support as needed, but no more than is necessary.

Families are the rightful foundations for planning and developing the education and support that children and young people need as they are the experts in knowing what they need to make things work for them.

While Family Leadership is something to strive for from the earliest possible stages, transition is a time when it comes into its own.

The young person, with the support of their family, has the right to be in control of their own life and to make their own decisions. It is important that the whole process of transition respects and strengthens young people in the exercise of this basic human right.

From the late 1990s central government policy and best practice guidelines has recommended that the voices of disabled children, young people and their families should lie at the heart of the way support is developed and shaped. However, the reality is that young people and parents are frequently marginalised in processes surrounding transition; lack the information they need to make informed decisions; and are absent from the decision making processes with respect to commissioning and shaping services. It is not, therefore, surprising that families continue to report a sense of alienation, disappointment, struggle and disempowerment.

Family Leadership does not depend on families doing everything for themselves. Rather, it relies on forging a radically different relationship between families and professionals paid to serve them. Because those working for the state are gatekeepers to resources, they hold power over families. Family Leadership depends on those holding the power to recognise their position and to commit themselves to supporting families in ways that allows for a shift in power dynamic and, at the very least, does not abuse that power. This demands high levels of personal integrity. The culture within large organisations makes it difficult for individual professionals to maintain the required levels of integrity.

The paper below explores the concept of Family Leadership and highlights some key steps to encourage its growth.  We outline some of the practical ways in which progress towards Family Leadership is being made across the Yorkshire and Humber region.

To read the paper

To download our paper on Family Leadership, please click the link below
Developing Family Leadership.pdf

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Page last published by Debi

"It seems bizarre to consider that authorities can develop services for people without having those people on board. It’s almost like this thing is too precious for anyone else to work on. I think that it’s just not happened before - ‘power’ being handed over to someone who isn’t paid to do something. But I think it’s more to do with being open and honest and saying “you lead this, just tell us what you want us to do”. That’s a big leap of faith."
(Alison Cowen & Jo Whitehead, 2011)