In England there is a network of Specialist AAC Services that are in place to provide specialised AAC equipment and services to people who need them.
The determination of who needs these services is not made on the basis of a medical diagnosis, such as Rett Syndrome, but on the specific needs (and abilities) of the particular individual.
There are currently 17 AAC Hubs based across England and Wales. The services the hubs offer vary from assessments and loans of equipment through to training and ongoing support.
It is sometimes difficult for families to obtain the necessary referral for their child or adult with Rett Syndrome to access these hubs to get a Specialist AAC assessment.
The NHS published new guidance for commissioning AAC services and equipment in March 2016. Page 11 of this document provides insight on how the determination whether to refer someone to a specialist AAC service is made.
Whilst government funding exists to support the provision of assistive technology for people who need it, unfortunately, this has not yet increased patient access to the technology, largely because there is a hugely outdated notion of pre-requisties required before a person is even able to be assessed to see if the technology is appropriate for them.
There is no evidence base for these pre-requisites. Whereas there is good evidence to the contrary.
The Tobii Dynovox “AAC Myths Revealed” series discusses common myths about AAC and the research that proves them to be inaccurate.
We understand from families in other areas of the UK that their experiences are similar to those of families in England. For more information about statutory assessment services in all areas of the UK please see here.
As this technology continues to develop and become more widely available (and less expensive), it is likely that more and more people with Rett Syndrome will have access to these devices.
But if you intend to seek statutory funding now or any time in the near future for a child or adult with Rett Syndrome, it will help you and the person you care about, if you can look at using an intermediate form of communication when trying to persuade the NHS to at first trial and then ultimately fund a device.