On the day of the launch, Sense - a national charity for children and adults who are both deaf and blind - will release a report called 'Breaking Out', a pioneering survey of parents and deafblind children and young people. It reveals that:
* Nearly 3 out of 4 parents said that they felt their families were under significant pressure as a result of lack of specialist services by the local authority
Sense will also release a research review showing clear evidence of the long term benefits of early intervention for deafblind children. 'Early intervention for children who are deafblind' by Heather Murdoch clearly demonstrates that deafblind children and their parents should receive support from skilled specialists at the earliest age possible so as to have the best chance to get the most out of life.
Key messages of the Reach Out campaign are:
* Deafblind children and young people need specialist help in order to be able to communicate, socialise, participate in everyday activities and develop their independence. And their parents may need specialist advice and practical help to enable them to support their deafblind child.
* Families of deafblind children and young people struggle to provide a fulfilling social life for them. These children's chances to mix socially with their peer group out of school are exceptionally limited due to a lack of accessible leisure venues,
information, one to one support and society's lack of awareness of their needs. This can put an enormous strain on their families.
* The government recently introduced new guidance to ensure that the needs of deafblind children and young people are met (see notes, point 3). Local authorities are now obliged to provide specialist assessments, appropriate information and services designed to meet the complex needs of deafblind people. But implementation is still incredibly patchy. Now we need to make these goals a reality.
Dr Tony Best, chief executive, Sense, said:
'Thousands of deafblind children and young people across the country are missing out on chances to take part in the world around them. But it doesn't have to be like this. This campaign needs to be successful in raising awareness and encouraging service providers to better meet the needs of deafblind children and young people throughout the country.'
A deafblind teenager and parents of deafblind children said:
'I just want tobe able to go out like my friends.' Deafblind 14 year-old boy
'Our children have a right to have fun and friendships as well as medical care and supervision. The real strain is seeing my daughter so isolated during school holidays and knowing it will get worse as she gets older.' Parent of 13-year old deafblind child
'When a child is younger being with family is fun - but what 16 year old wants to spend all the time with their family?' Parent of deafblind 16 year old teenager
'Mark enjoys groups but is still isolated at youth clubs as there are no signers or anyone with a knowledge of multi-sensory impairments. He loves to mix with his peer group, but he is vulnerable.' Parent of deafblind 14-year old
The governmental guidance referred to in this press release is called
'Social Care for deafblind children and adults' (LAC 2001 (8)). Local
authorities are now required to provide specialist assessments, one to
one support, appropriate information and services designed to meet the
needs of deafblind people.