Deaf children with Special Educational Needs not getting the right support
Deaf children with additional complex needs and SEN are being let down by the health services who offer either inadequate medical care and support or, shockingly, none at all.
According to the largest ever study into the experiences of deaf children with complex disabilities, medical staff are "overwhelmed? by the needs of such children and are simply not delivering the high standards of care and support these children and their families need and deserve. It has been our recent experience that the current climate of cuts is making matters even worse.
It's estimated that about 4,500 deaf children in the UK have an additional disability and the report, which interviewed 50 families with a deaf child with additional complex needs, uncovered some shocking stories.
For example, in one case a deaf child was not diagnosed as being profoundly blind until she was 18 months old, despite her mother's best attempts to draw doctors? attentions to the disability.
As survival rates continue to rise for deaf children with complex disabilities, the research revealed the 'shockingly low? expectations some professionals have of these children - the report states that professionals simply see a collection of conditions instead of the whole child. In fact, the report reveals great alarm at services which are simply not geared up to support or care for the growing number of children who are deaf with other disabilities.
Dr Wendy McCracken, co-author of the report, interviewed 50 families of deaf children with conditions such as autism
, Down's syndrome
and cerebral palsy
"This group raises significant challenges for support and medical services because of the complexity of their needs," said McCracken. "But instead of striving to help them, researchers frequently exclude these children from research studies."
She found that professionals seemed "overwhelmed" by the complexity of these children's needs, with others telling parents that their child's deafness was a minor issue that "could be dealt with later". The report also found evidence of parents being wrongly told that their child did not meet the referral level for support services.
While not cochlear implants are not the answer for all children or parents, it is important that all aspects are properly considered with everyone involved. It appears that some children who have additional difficulties are routinely denied treatment without proper thought being given to potential benefits and needs. "Children were also denied treatment, in particular cochlear implants, on the basis of their additional complex needs," McCracken said. "This suggests that some professionals may as a result be discriminating against these children."
The research found that even at special schools for children with learning disabilities the specialists themselves lacked the skills and knowledge to deal with deaf children with additional needs.
"This is contrary to the expectation that deaf children with additional complex needs can take advantage of all the specialisms within such schools," said McCracken.
"Several parents expressed concern about services having low expectations of their child," she added. "There were some examples of poor professional practice, where serious conditions were left undiagnosed and often only picked up by a chance encounter by other professionals."
The majority of parents with a deaf and disabled child said that accessing medical services was the most challenging part of the process. They have described audiology departments which cannot cope with children's behaviour and which are unable or unwilling to adapt their tests for children with additional complex needs.
"My son is deaf and has cerebral palsy, and so is physically unable to do the tests the hospital try to make him do," said one mother. "It doesn't matter how often I tell them: they just say it's the only test that they can do and they can't refer or treat him until he can complete the test."
The report was researched and published by the National Deaf Children's Society (NCDS) and the University of Manchester.
In these days of cuts, it is all the more important to make sure that you are getting the right advice and right support, so that your child's therapy and provision can be protected. We are able to advise you on all aspects of provision for deaf children, whether it be educational, access to health treatments or community care support.