The training from SENSE included deafblind awareness, understanding some of the specific issues that might be faced by parents of deafblind babies, and looking at some of the strategies that have been proved to be helpful in the support process for these families and babies. Following this training, members from the group decided to work together to draw up strategies that will help to ensure early identification of deafblind and multi-sensory impaired infants and children.
In particular the role of the Intervenor was explored. This is the term given to a person working in a very specialised way with a deafblind child. The aim of the Intervenor is to enable the child to learn compensatory means of accessing information from the environment that would normally be gained through hearing and vision. The Intervenor acts as a 'bridge' to the environment, taking the child to touch, bringing objects to the child to explore and experience the movement or sound through their whole body or developing tactile means of communication.
At an early stage of these regular meetings it was clear that it would be helpful to develop a 'process map' of all the relevant services and departments. The intention of this 'process map' was that it would clearly show the procedures for progress through the various medical assessments and referrals to other departments. It would show where and when to establish linkages with other organisations including education and social services. The pathways for Special Care Bbaby Unit (SCBU) babies and well babies should be easily tracked. In each case the linkages have been identified that show when and to whom a deaf baby should be referred if there are concerns regarding vision, or indeed any other additional disability.
The main aim of this part of the group's work was to ensure that after hearing loss is identified, any other aspect of a child's needs should be addressed at the earliest opportunity. In particular, for deafblind babies, it was recognised how important it is to ensure that this particular disability does not go unidentified, as happened so often in the past. All the professionals from each discipline have acknowledged the need for these babies to have early identification of their needs as a pre-requisite for the most suitable Early Support to be established. This 'map' will go a long way to ensuring that children are not missed, or routed through ENT/Paediatrics and classified as a child with global developmental delay without a recognition of the extent to which sensory impairments may be likely to affect functioning.
Once the development of the 'process map' way under way, we turned to the other challenge. Government guidance, both with regard to education and social care for deafblind children, is that an Intervenor should be provided at the earliest opportunity to help the family, and later the school, to communicate and stimulate the baby with compensatory strategies. At the very beginning the main care-givers provide the Intervention but the role is so intensive that it is helpful to supplement and support them.
In recognition of the fact that this is a little known or understood role beyond deafblind circles, we decided to try to put together a list of possible reasons why an Intervenor would be necessary for a child. We considered that a reasonably simple but comprehensive document would be useful in supporting any request for the additional funding that might be needed.
What we have finally produced is a list of statements, divided into three learning areas:
There is space to indicate whether the child needs the particular support always, sometimes or whether it is not applicable for some reason, perhaps because the child is not yet at that stage of development, or has physical disability in addition to deafblindness. There is also a column for amplifying remarks. In addition, there is a list of terms that may be used in deafblind/msi education with explanations.
The following are a sample of the statements that might be selected for any child. In the sensory development and integration section there are eight statements including "the child requires a planned programme of stimulation to promote visual development"; "the child requires planned use of paired sensory stimuli to aid the development of listening and visual skills, for instance vibration and sound, vision and touch or vision and sound".
In the communication section there are seven statements including "the child needs compensatory strategies using the sense of touch, and planned action sequences to develop attachment and bonding behaviours with both primary carers and the wider circle of people beyond the family"; "communication requires planned and deliberate use of tactual access to objects to enable understanding of processes, activities and events".
In the body awareness, movement and mobility section are nine statements including
The document is not supposed to stand alone. We would envisage that it would be completed on behalf of any child and submitted alongside a range of other assessments that may have been conducted. There would be probably be clinical assessments of hearing and vision and also functional assessments of the child's use of hearing and vision in different situations. There would be a functional communication assessment focusing on early pre-verbal communication behaviours and strategies. There may also be a need for physiotherapy advice alongside functional assessment of the impact of lack of vision on the process of learning body image and the co-ordination of movements.
The assessments undertaken should be collaborative, involving a range of different professionals. However for deafblind/msi children the qualified teacher for MSI would need to have a co-ordinating role in interpreting the observations and giving educational guidance. The matrix document should act as an aid to understanding about the reasons why additional support is being requested, and should also assist in the evaluation process when considering the benefits that Intervention might bring to a child.
Now that this part of our work is completed, we have decided that we should continue to meet to look at routes through service provision in all our services to identify and clarify where children might be referred from one to another. We are also planning to compile some leaflets which would provide key points to promote awareness of a deteriorating sensory condition and guidance about where to go for further advice.
Participants in the working group were G Attey, V Fathy, P Gibbons, P McKeogh, G Painter, L Reed, D Roberts, M Robinson and S Parsons.
For further information about the map through the medical assessment processes, please contact Doreen Roberts (Consultant Audiologist)
For information about the document for Indicators of Need for Intervenor Support, please contact Patricia Gibbons (Advisory Teacher for Deafblind Children)
For further information about meeting the needs of deafblind children see the document 'Reaching Out, a toolkit for deafblind children's services’ published by SENSE, 2004