Twenty years ago, Helen Norris, now head of pre-school services for the London borough of Bromley, gave birth to a baby with Down's Syndrome.
'I felt so frightened when they told me my son had difficulties,' she says.
'They sat me on the edge of a bath at hospital and said you don't have to take him home, he will never be more than a vegetable. I was in my mid-20s and had had little contact with children with disabilities. It was very scary.'
Helen, who is head teacher of the Phoenix Children's Resource Centre, has ensured that parents in Bromley are not told about a child's disability in that brutal way. 'We have done some work around sharing the news of the disability, ensuring it is presented in a sensitive and supportive way.'
In 2003, Bromley's Pre-School Services and the Phoenix Centre became one of the first nine National Pathfinder pilots for the Early Support Programme seeking to provide joined-up services for very young disabled children and their families. Now, when the baby leaves the hospital, the parents can receive a package of multi-agency support and care.
'When you know there is going to be someone supporting you from the beginning, it can make the world of difference,' Helen says.
The Early Support programme, which recently won Sure Start's Partners in Excellence award for Transforming the Children's Workforce, supports children with complex health and learning needs up to their third birthday.
Each such child in Bromley is assigned a key worker who co-ordinates care, provides support and information and acts as a single point of contact for the family. An Early Support Family Service Plan outlines the support different agencies offer.
'Working with the child and family in a co-ordinated way prevents bottlenecks and reduces waiting times for services and support,' says Helen. 'When my son Pip was born, services were not co-ordinated. Sometimes you got lots of support, sometimes none.'
Setting up the whole Bromley Early Support programme was a huge challenge in the early days, admits Helen. She says, 'We were very excited about it and knew it would make things better for families with disabled children.'
One of the difficulties was that different agencies had different working conditions and followed different service plans. Bromley has now achieved co-ordinated support by ensuring a single, multi-agency referral panel for all pre-school children, ensuring a joint agency response to initial assessment of need and achieving joined up information on services available to families. A total of 130 multi-agency professionals are now actively involved in Bromley Early Support.
'We had agencies working from different databases. Now we have one multi-agency accessible database which has made things much easier,' Helen explains. 'Another problem was that we found different agencies spoke a different language. I didn't realise until I was giving a talk at a specialist care baby unit at a hospital and I was talking about SEN and a doctor asked me what that was.'
As a result the different agencies met up to discuss the language they use.
'Now we are very conscious of the jargon we use and do our best to present information to families in a family-friendly way,' she says. 'Our pre-school and parent multi-agency information pack even has a "jargon buster" and we do not use acronyms. Our parents' group scrutinised this document and pulled us up on anything they did not understand.'
Bromley's Early Support Programme has pioneered new roles and now has dual workers. 'These staff are trained in medical competencies and educational areas,' explains Helen. 'They are trained to do gastrostomy tube feeding, for example, as well as being effective support assistants. They go to the child's home and support the child and family, helping get the child ready and bringing them in to the centre. Previously, the worker waited at the centre for the child and the family to arrive. A child with complex needs would not have been able to come in without the home support.'
Helen says the programme has had a huge impact, leading to earlier assessments and improving the child's development and family well-being.
Before the programme was set up, a child was often referred to up to 10 different teams of people. Now it has one co-ordinated referral panel.
Through its Early Support Programme, Bromley has managed to alleviate some of the fear felt by parents struggling to cope with the needs of a disabled child. In the words of one parent, 'The Early Support Programme has made us feel positive and hopeful for our son's future.'
