Health and Support Services Fail Deaf Children with Complex Disabilities

Introduction

Parents of deaf children with complex disabilities are locked in battle with health, social care and education professionals to access vital support and medical care for their child, a report has revealed.

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The research from The University of Manchester and National Deaf Children's Society ( NDCS ) discovered issues including late diagnosis, problems accessing medical treatment, and difficulties in obtaining specialist support. The report, which is the largest of its kind, 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. Nicola 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 focusing only on their area of practice, they need to see the whole child and be willing to work together."

The report comes ahead of the Government's special educational needs ( SEN ) Green Paper, due to be published this month, and urges Government and professionals to proactively work together to deliver the support that children with multiple disabilities desperately need.

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 emphasized 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.

For further information on childhood deafness, parents can visit the NDCS website at www.ndcs.org.uk or call the Freephone helpline on 0808 800 8880. Parents can also access an online forum for parents, www.ndcs.org.uk/parentplace, where they can share experiences and provide support to each other.

Key findings of the report:

• Parents are fighting for access to essential services and support for their child, which is taking an emotional and financial toll on them and their family.
• Barriers to these services and some professionals' low expectations of children with ACN are limiting their ability to fulfill their potential
• One in five deaf children with ACN did not have access to a teacher of the deaf
• Late diagnosis and treatment of deafness is a common issue
• Almost a third of parents reported major delays in medical and technological assessments, such as getting hearing aids, for their children.

Recommendations for professionals and decision makers:

• Engage with families to find out how best to meet their needs
• Communicate and share information with other professionals caring for the child
• Consider all of the child's needs, not just the aspect of their care they specialize in
• Be positive about each child's future and discuss this with parents

About NDCS:

The National Deaf Children's Society ( NDCS ) is the leading charity dedicated to creating a world without barriers for deaf children and young people.

Four babies are born deaf every day and almost all deaf children ( over 90 percent ) are born to hearing parents with no experience of deafness.

There are over 45,000 deaf children in the UK.

Parents with concerns about their child's hearing can contact the NDCS Freephone Helpline on 0808 800 8880 ( voice and text ) or email helpline@ndcs.org.uk

Holden-Pitt and Diaz, 1988; Stredler-Brown and Yoshinaga-Itano, 1994; Fortnum et al.1996.

Figures taken from a sample of 8,000 families who have registered with NDCS since 2005.