How changes in the law are affecting those who support children with multi-sensory impairments
Multi-sensory impairments and deaf blindness cover a wide range of different needs. Some children will have no sight or hearing while others have some sight and/or hearing. Many children with sensory impairments will also have other complex disabilities, including rare syndromes such as Usher syndrome and CHARGE syndrome.
Supporting a child with multi-sensory impairment (MSI) can be a complex process and no two children will have the same needs. Making sure that a child receives a specialist assessment and has access to appropriate support is key. Many different professionals will be involved in the child’s life – from health, care and education – so it is important that there is a joined up approach.
From September 2014, local authorities in England began to introduce a new system for children with SEN and disabilities, following the introduction of the Children and Families Act. This brought in a number of major changes, including the replacement of statements of SEN and learning disability assessments with education, health and care (EHC) plans. Local authorities now have a duty to publish a “local offer”, which sets out the services expected to be available to children and young people with SEN in their area. There is also a much stronger emphasis on joint service delivery and planning between agencies.
In principle, these changes should improve the system and be of benefit to children and young people with SEN and disabilities. There is concern, however, that local authorities and practitioners are still getting to grips with the changes. The new SEN Code of Practice and implementation guidance was only released last summer, shortly before the Act came into force. Many of those who work with children with SEN and disabilities simply haven’t had time to fully understand the changes or receive training to help implement them.
For children with a sensory impairment it is vital that professionals understand the impact of the changes to the system. Practitioners must be able to identify those who have a sensory impairment and ensure that this information is passed on to all the professionals who work with them. This includes those who plan for and commission services in the local area. Without effective identification and recognition of sensory impairments, these children cannot access the specialist support they need.
Children and young people who are deafblind have specific support needs. In particular, they often need one-to-one support such as intervenor or communicator guide support. These services may be more economical to commission jointly and some aspects, such as one-to-one support may be appropriate for personal budgets and direct payments, with the right level of funding.
For those who are deafblind, the Deafblind Guidance still applies and outlines practitioners’ duties. Deafblindness is low incidence, so practitioners should not be afraid to seek help from specialists who have the relevant experience and knowledge.
Professionals should involve families in the planning and service development process.
Transition to adulthood is a challenge for all young people and particularly for those with a complex disability. It is important to plan in advance, start early and be creative in ensuring young people have a say about what they want; some young people may need actually to experience things in order to understand what their options are.
Parents should take an active part in the assessment process and provide the local authority with as much relevant information as possible. The Children and Families Act 2014 requires local authorities to involve and work with parents and young people during the assessment process and development of the EHC plan. During the early stages, the local authority has to communicate with parents and identify the best ways to support and involve them. This could include:
- providing relevant information in accessible formats
- allowing time to prepare for discussions and meetings
- setting aside time in discussions or meetings to hear the views of parents. The SEN Code of Practice also requires authorities to seek the views of the child involved.
Local authorities are not required to ask parents for written evidence, but it is advisable for parents to submit a written document setting out their views on their child’s needs.
If the decision is that an EHC plan is needed, the local authority should start writing the plan and must issue a draft plan within 16 weeks of the request or the child being brought to their attention. The authority must issue a final plan no later than 20 weeks from the date they received the original request for an assessment.
For those with complex sensory needs, a qualified MSI teacher should be involved in the assessment. Parents can ask the authority to consult with a named specialist; the authority generally has to do this if it thinks your request is reasonable. The authority must seek advice directly from an MSI specialist teacher and obtain educational advice from the child’s school or college. For deafblind children, consulting a teacher of the deaf and/or a teacher for the visually impaired will not be enough; an MSI expert must be involved.
Deafblind children have a right to a specialist Deafblind Guidance assessment of their social care needs, to be carried out by a person specifically trained and experienced in deafblindness, in addition to an assessment of their education and health needs. For these children, their needs in terms of communication, access to information and mobility can be very closely related to educational needs.
It is important that families get the support and information they need. The new Act and Code require local authorities to arrange independent information, advice and support for parents and young people. The family’s named contact at the authority should be able to provide details of the organisation which provides this support locally. To help guide families through the process and coordinate the input from different professionals, local authorities are being encouraged to provide key workers and “independent supporters” for families who need them.
Steve Rose is Head of Children’s Services at the deafblind charity Sense: