My Brother John

I recently attended a Warren Estabrooks conference at St George’s Hospital in London about the use of auditory verbal therapy (AVT) , a “brand” of speech and langauge therapy for deaf children . AVT aims to help deaf children speak. To the outsider speech and language is a given- if you don’t have a deaf child you may not really appreciate the complexity of this issue - if you  work in this area or study it you have to learn it and be open to changes and advances in technology.

The case studies presented showed outcomes that anyone would have to admit can be staggering and inspiring. Children in the Estabrooks programme were given weekly speech and language therapy for  5 years! I don’t think there are many places in the UK that could even offer one session! AVT is not for everyone , around 4 out of 10 deaf children have additional needs, but I was pleased to hear that the professor also was of the opinion that everyone should be “allowed a kick at the can”. That said, in the UK for those who want to receive AV speech and language therapy you are pretty much in a postcode lottery as to whether you can find a person who is trained in AVT. You will have a battle with educational authorities because it delivered to the family and “family centred” is not the educator’s concern so that means you would have to have very deep pockets to afford this. To replicate the 5 years Eastabrook programme costs would run into many thousands. I think that’s why it may have been seen as for the elite but it should not be seen like this - it should be a choice offered to all.

On a more positve note there are places that offer parents and professionals correspondence courses such as the John Tracy Clinic see http://www.mybrotherjohn.co.uk/jtc.aspx . It is run and formulated by the John Tracy Clinic, this is a really useful course for parents who are learning to communicate with their deaf child. It’s full of encouragement and support.

The lecture was without question inspirational to see the the powerful case studies that were presented was worth the trip as it really helps to see outcomes. But just as all outcomes are not equal neither is the treatment and packages of care available for those with children who have a hearing loss. Parents not only have to deal with the pain of diagnosis - they also fight for consitent care but they have to fight for therapies that if provided would provide greater coutcomes. For example, the recent NICE guidance agrees that health providers should deliver bilateral hearing to deaf children - the lack of stipulation of packages of care to include large amounts of complementary speech and language therapy seems at best bad planning. Purchasers of health care seem to be oblivious to the success that can be acheived by combining best practice. Health providers appear  “slow” at reacting to parents demands for more speech and langauge therapy and sadl parents have to have some drive to ensure they fight for what they want for their deaf child. The education providers have to ensure that training takes place to keep all their teachers of the deaf abreast of the advances in technology and to raise their expectations.

I also think that Estabrooks brand of AV therapy is evolving - his leadership and charasmatic approach is infectious  and it shows that all AV therapy is not the same. However this evolution is not taking place fast enough  for parents of deaf children who are being told you can’t always get what you want.