We know how you feel
Every local authority is required by law to provide parent partnership services to support parents of children with special needs. In Brighton and Hove this service is run by a charity, Amaze, which aims to guide parents through the maze of statutory procedures and make sure their children get the help they need.
Many parent partnership services operate from within local education authorities - but Amaze, which began life in 1997, with the merger of two projects in social care, health, and education, is only part-funded by the local authority and remains independent.
Kim Aumann, director of Amaze, believes this status gives the service credibility with parents because they feel it offers impartial advice. "As a charity, we can pursue projects - including preventative work - that might not be a top priority for an education authority."
GETTING IN TOUCH
Many parents are unaware of their local parent partnership services, but Amaze has addressed this problem through the creation of a database, the Compass. In its first three years, it has logged 850 families (Aumann estimates there are 1,600 children with disabilities in Brighton and Hove).
They receive regular newsletters and a Compass leisure card, which gives them access to free swimming and cheap tickets to a monthly cinema club, where parents need not worry about the reactions of the general public and where the children can learn the ropes of buying their tickets and popcorn.
The popularity of the Compass card means many people hear of Amaze by word of mouth: first contact is often via the charity's telephone helpline.
More than half of calls to the helpline are about educational issues: some parents struggle with the bureaucracy of the statementing process; others are anxious about attending meetings with teachers and other professionals.
Amaze refers many parents to one of its team of 10 trained volunteers - the independent parent supporters. They work with the family, for instance, helping them complete forms or accompanying them to meetings to give moral support. Out of this may arise other issues the charity advises on, such as respite care, or making disability living allowance claims.
Amaze also runs courses and workshops for parents and schools. They are designed to improve communication on both sides, to avoid some of the conflicts that can become a feature of the lives of families with disabled children.
WORKING WITH SCHOOLS
Last autumn, Downs View school in Brighton, a school for children with severe learning difficulties, commissioned Amaze to run a course on conciliation skills for its staff.
"We need to be sure everybody in school understands the tensions that exist for parents, and is equipped to deal with the anxieties and stresses of working with children with complex needs," says Adrian Carver, head teacher.
Sandy Austen, administrator at Downs View, is often the first port of call for parents contacting the school, and says she found the course - which was organised in four twilight sessions - very useful.
"Parents may ring up to make an appointment feeling anxious, or they may come in with a fighting attitude. It's a case of trying to put their minds at rest, and listening to what they are saying. That's what really came out of the course: listening to them, and relating back."
The course, designed by two DfES south regional partnerships, uses role play to help staff with "mirroring" - getting on to the same level as parents and showing concern - and dealing with face-to-face conflict by stepping back and reconsidering.
It also emphasises ways schools can help parents - many of whom will be extremely sensitive about their child's needs - feel more comfortable. For example, it recommends giving them somewhere pleasant to sit and wait, and making sure they are not the last to come into a room full of professionals.
"Schools need time to get these sorts of things right," says Kim Aumann.
"Teachers don't get any of this in their training."
Tina Reynolds, special educational needs co-ordinator at Saltdean primary school, Brighton, signed up for a one-day conciliation skills course for professionals in March, after contacting Amaze initially as the parent of a child with a disability.
"I knew from my experience of Amaze that the course would come from a neutral standpoint, and it was great. For instance it looks at why a parent might be coming across in an aggressive manner; and it shows the constraints under which a local authority may be operating."
This kind of understanding, she says, can lead to parents and professionals collaborating in the interests of a child, so everyone works in the same direction.
Contact Amaze on 01273 772289 or email email@example.com