Deaf children with additional needs are having their futures blighted by bad, unprofessional and often non-existent support and medical care.
Some medical staff are “overwhelmed by these children’s complexity of needs” while others treat deafness as a minor condition that can be addressed later in the child’s life, according to the largest study into the experiences of deaf children with complex disabilities, published on Wednesday.
In one case, doctors failed to diagnose a deaf child as also being profoundly blind until she was 18 months old, despite the mother repeatedly reporting her daughter’s inability to see.
In another case, the behaviour of a blind toddler who repeatedly hit his head against hard surfaces was dismissed as normal for a child with learning disabilities. It was not until the father persuaded the doctor to watch a film he had made on his laptop, that the child was diagnosed with a brain tumour.
Susan Daniels, chief executive of the National Deaf Children’s Society (NDCS) at the University of Manchester, which funded the Complex Needs, Complex Challenges report, said: “We are alarmed by the findings of this research, which shows services are not geared up to support or care for children who are deaf and have other disabilities.”
The research revealed the “shockingly low” expectations some professionals have of these children: often, the report said, a result of them seeing a collection of conditions instead of the whole child.
“As the number of children with complex needs rises, due to increasing survival rates of children who are born prematurely or suffer a severe illness, it is becoming even more important for services to drastically improve how they support these families,” added Daniels, who is organising an NDCS weekend for families and deaf children with additional complex needs (ACN) from 4 March.
“We urge professionals to work with parents to address shortfalls so that deaf children receive the support and care they need,” she added.
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.
It is estimated 40% of deaf children have an additional disability. The NDCS estimates that 10% of deaf children, approximately 4,500, in the UK have ACN.
The report comes ahead of the government’s special educational needs green paper, due to be published this month.
“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.
“Children were also denied treatment, in particular cochlear implants, on the basis of their additional complex needs,” McCracken said. “This suggests that some professionals are poorly informed about the potential benefits of cochlear implantation for deaf children with additional complex needs, and may as a result be discriminating against these children.”
Even the specialists at special schools for children with learning disabilities lacked the skills and knowledge to help deaf children with other, complex needs, the research found.
“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.”
Accessing and dealing with services is so difficult that the majority of parents in the study said it was the most challenging part of having a disabled child.
They described audiology departments not being able to cope with children’s behaviour, or that they were unable or unwilling to adapt 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.”
Source: The Guardian