A study has found that having a child with learning or behaviour difficulties puts great pressure on family life, compounded by parents having to fight constantly to secure the appropriate education for their children. Many of their problems arose from the confusion and frustration of having to deal with outside agencies and professionals assigned to help them.
The study, by Margaret Rayner of Nasen, found that it was not unusual for families to be involved with as many as 12 professionals of different disciplines including doctors, teachers, educational psychologists, social workers and speech therapists.
Dr Rayner, who carried out the study as part of doctoral research into parent professional partnerships in special educational needs, said: "There is a drain on the parents' energy levels, both physical and emotional, and parents speak of feeling exhausted and of the need for medical assistance to see them through.
"Several had, or were, taking tranquillizers. The impact on the remainder of the family must not be underestimated."
Dr Rayner said one family had calculated having made 774 contacts, spent 4,942 hours on appointments and phone calls, and travelled 11,000 miles to appointments relating to their seven-year-old daughter's needs.
She found that relationships between families and professionals were often strained, and parents found them insensitive and lacking compassion: "They see many professionals as abrupt and curt, with too little time to devote to the particular problem."
Families also complained about the bureaucracy of the system, and the jargon contained in paperwork.
One parent said that professionals did not explain what their role was in the life of the child. "It's like an exclusive club, where the professionals know the terminology and the parents don't," Dr Rayner said.
Parents sometimes felt their parenting skills were being questioned, and were made to feel guilty about their child's condition. Others said they were not taken seriously enough. "Parents would like to see their child's needs met without them having either to fight or struggle to get the help they feel is their child's right.
"They also feel that this would be beneficial in terms of educational and social skills and to the service providers in relation to costs," she said.
A separate study by Christine Rogers, from Cambridge University's Centre for Family Research, also found that parents experienced difficulties in finding appropriate schooling for their children. Many felt ambivalent towards the policy of inclusion and were sceptical that it even worked. While most had an expectation that their children would have a mainstream education, they found that this was often problematic in reality.
Some encountered prejudice from staff. One parent, whose son had cerebral palsy, moderate learning difficulties, and hydrocephalus, was called in to see the head after his first day at school. The headteacher told her "I wasn't aware I was having a bloody retard in the school".
Another, whose child had attention deficit disorder, was asked to keep her son away during tests so that he did not affect the school's league table ranking.
Dr Rogers said that policies on inclusivity should focus on social inclusion rather than inclusive education: "It seems there are many children who are 'included' in mainstream education but excluded at different levels."
She found youngsters were often removed from class for one-to-one work in a unit, or intellectually found it difficult to access the curriculum in the same way as their peers. Emotionally, many had difficulty in engaging with others and sustaining friendships because of their challenges.
Her study also found that parents considered teachers and classroom assistants not sufficiently well-trained to deal with some children's needs. Dr Rogers said better training should not be "an add-on or a module, but throughout".
* A specially-commissioned poll for The TES will reveal that a majority of teachers are in favour of inclusion in principle, but at the same time do not want to see special schools closed down. The study, to be published in The TES on October 14, will also show that a significant number of teachers know of at least one pupil who has dropped out of the mainstream in the past year, and enrolled in a special school.