Date Published: 3 March 2011
Support for Deaf Children with Complex Disabilities (UK)
Recent research at Manchester University (England) in collaboration with National Deaf Children's Society (NDCS) has highlighted many urgent issues of concern to the parents and carers of deaf children who have complex disabilities. These issues include, for example, late diagnosis, problems accessing medical treatment, and difficulties in obtaining specialist support.
The recent studies have been described in a report entitled "Complex Needs, Complex Challenges" that has been released today, Thursday 3rd March 2011. This 91 page report is the largest of its kind and described some professionals as 'overwhelmed by the complexity of needs' and others as treating deafness as a minor condition that can be addressed later in the child's life.
Dr Wendy McCracken, from Manchester's School of Psychological Sciences, interviewed 50 families of deaf children with conditions such as autism, Down Syndrome and cerebral palsy which, when combined with their deafness, require more tailored approaches to their individual needs. It is estimated 40% of the total population of deaf children have some kind of additional disability. NDCS estimates that 10% of deaf children, approximately 4,500, in the UK have Additional Complex Needs (ACN).
Nicola Slator is one of the parents interviewed in the study. Her daughter Rebecca, aged 10, has multiple conditions, including microcephaly and scoliosis, and is profoundly deaf. Ms Slater said:
" My biggest frustration is that professionals don't work together. I spend all my time as a go between, juggling appointments because they don't work together, when I should be spending more time with Rebecca and my other children. Instead of doctors and teachers focussing only on their area of practice, they need to see the whole child and be willing to work together."
NDCS Chief Executive Susan Daniels 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. It is particularly shocking to discover the low expectations that some professionals have of these children, often seeing the collection of conditions rather than the 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. We urge professionals to work with parents to address shortfalls so that deaf children receive the support and care they need."
The importance of respite care and the value of support networks of other parents were heavily emphasised by the parents interviewed for the report. In response, NDCS is holding its first ever Big Weekend for families and deaf children with ACN from March 4 to 6 in Cheshire, where parents and children can come together and share their experiences as well as accessing specialist support.
A copy of the report can be downloaded from: http://www.ndcs.org.uk/news/ndcs_news/health_and_support.html
Source: Manchester University, England (UK)..