Route map to meeting the needs of deafblind children and young people in the new SEND system

This multi-disciplinary guide was published in 2014 in response to the changes to the system of Special Educational Needs and Disabilities (SEND) in England. The changes were introduced through the Children and Families Act 2014. 

This has been designed for all professionals who work with children and young people with deafblindness/multi-sensory impairment (MSI) to help them to understand the implications of the current SEND system.

What’s on this page

• Overview of the new system of Special Educational Needs
• Roadmap for meeting the needs of deafblind children and young people in the new SEND system
• Identify: Improving identification of deafblind children and young people
• Assess: Providing appropriate assessments for Education, Health and Care Plans
• Involve: Involving and supporting deafblind children, young people and their families
• Support: Providing appropriate services for deafblind children and young people
• Managing transition: Supporting deafblind children at key points of transition
• What is deafblindness/multi-sensory impairment?
• What does deafblindness mean for children and young people?
• Useful contacts/resources
• References

Overview of the new system of Special Educational Needs

The government introduced changes to the way the system of SEND operates in England in 2014. The changes were made into law through the Children and Families Act (2014). 

Under the current system, education, health and social care services are encouraged to work more closely together to understand each child/young person’s needs better, deliver more suitable services and help children and young people to achieve their outcomes. This is a significant opportunity to join up and coordinate provision, especially for children with multiple needs such as those with MSI.

A detailed guide to the system of SEND is available in the SEND Code of Practice Guidance. In summary, the most important changes to be aware of are the following: 

Education, Health and Care plans

• Under the new system, Statements of SEN and Learning Difficulty Assessments (LDA) will be replaced with new Education, Health and Care Plans (EHC plans). EHC plans will be developed by a range of health, education and social care professionals working together to discuss the needs of the child/young person. 
• EHC plans will describe the nature of the child/young person’s SEN and will include information about the support they need to get the most from their education. They will also set out any health and social care provision that may contribute to the child or young person’s ability to learn. The agencies named in the plan will be responsible for delivering the support outlined. 
• Unlike Statements of SEN which were only available between the ages of 0-19, EHC plans will be available to children and young people from the ages of 0 to 25. Young people over 19 will continue to be supported through an EHC plan if they remain in education or training and where more time is needed to help them achieve their learning outcomes. 
• Young people entering Higher Education will not receive support through an EHC plan. Instead, they will receive support through the Disabled Students Allowance (DSA). 

The Local Offer

• Under the new system, each local authority must produce a ‘Local Offer.’ (1) The Local Offer will set out, in a single place, information about what services will be available locally to support children and young people with SEND, including education, health and social care services. The Local Offer must be made available online and must include information about eligibility and how services can be accessed.
• The local authority must draw up their Local Offer after consulting with young people and their parents. It will also flow from joint commissioning at a strategic level. Parents and young people must be given the opportunity to comment on the quality of the Local Offer and the local authority must show how they have responded to these comments. Information about meeting the needs of children and young people with sensory impairments through the Local Offer will be available from NatSIP.(2)

New types of support available for families and young people

• A key principle of the new SEND system is that the views of parent/carers and young people must be at the centre of all the decisions made. If they desire it, and have the capacity to do so, young people will also be given additional rights to make their own decisions when they reach the end of compulsory school age.
• Local authorities must provide access to independent information, advice and support to parents, and children and young people with SEN and disabilities. This should include providing access to ‘Independent Supporters’ to help families to understand how the new system works and to guide them through the new processes.
• If a child/young person is offered support through an EHC plan, parents/young people will now have the right to request a personal budget to help them access support. The personal budget will allow young people or parents to get involved with securing the provision outlined in the EHC plan. 

The Deafblind Guidance

In recognition of the challenges faced by deafblind people, in 2009, the Department of Health re-issued a piece of guidance named, ‘Social Care for Deafblind Adults and Children’ (The Deafblind Guidance).(3)

The guidance places important legal duties on all English local authorities to identify deafblind children and young people living locally, provide specialist assessments and to deliver support to meet the needs identified. They must also designate a senior member of staff with specific responsibility for deafblind people. 

It is important to be aware that despite the changes taking place, the legal responsibilities towards deafblind children and young people set out in the Deafblind Guidance will remain in place. This means that within the new assessment processes for EHC plans, deafblind children and young people will still be entitled to an assessment of their social care needs which is carried out by a suitably qualified professional. (4)

They will also be entitled to receive specialist support, based on the nature of the needs identified. 

Timescales for moving on to the new system

From September 2014, children and young people who are entering the SEN system for the first time – meaning all those who do not already have a Statement of SEN or LDA in place – will be assessed for an EHC plan. There will be no new assessments for Statements of SEN or LDAs after September 2014.

Children/young people who already have a Statement of SEN or LDA will continue to receive the support outlined within their Statement of SEN/LDA. This means there should not be a gap in the support offered to children and young people as a result of the changes being introduced. However, local authorities will make arrangements to transfer children/young people with a Statement of SEN onto an EHC plan at some point within the first three and a half years of the new system being operational, and therefore by April 2018.

Young people who currently have an LDA will need to request an EHC needs assessment if they require an EHC plan. Unlike Statements of SEN, the local authority does not initiate the transfer review process. 

If the young person is over the age of 18, they will only be transferred onto an EHC plan if they need longer in education or training to achieve their outcomes or make an effective transition into adulthood. 

Local authorities will decide exactly when children and young people with Statements of SEN or LDAs should be transferred onto an EHC plan. They are likely to do so when the child/young person is at a key point of transition in the education system, such as when they are planning to move between education settings or as they approach school leaving age.

Route Map for meeting the needs of deafblind children and young people in the new SEND system

In order to support deafblind children and young people most effectively within the new SEND system, professionals should follow the roadmap by prioritising the following five areas of best practice.

1. Identify

• Understand the characteristics of deafblindness
• Agree a shared definition
• Use dedicated surveys
• Keep local SEND data up-to-date
• Share information with other professionals

2. Assess

• Follow the Deafblind Guidance
• Conduct appropriate assessments
• Set appropriate outcomes 

3. Involve

• Support children, young people and their families to participate
• Co-ordinate meetings and assessments
• Provide advocacy support

4. Support

• Deliver specialist MSI education support
• Arrange specialist 1-1 support 
• Check appropriate social care support is available
• Provide appropriate health care services

5. Manage transition

• Plan for transition in a timely way
• Involve MSI specialists in transition planning
• Take a person-centred approach
• Use co-ordinators to provide support
• Understand the Care Act 2014

Identify

It is essential that deafblind children and young people receive support at as early a stage as possible, as their sensory issues are likely to affect their ability to learn effectively and communicate fully with the world around them. 

Within the new SEND system, accurate identification of deafblindness will also be the crucial first step towards appropriate support being put in place or the start of the process for an EHC plan. Despite this, it is often the case that children and young people with deafblindness do not get identified early enough. 

It is important to identify and support those children and young people whose primary disability is not seen as sensory impairment, but who are also deafblind. 

In particular, it is vital that those who provide services for children and young people with learning disabilities understand that deafblindness coincides frequently with forms of developmental delay and physical disability. If not, it can mean that children and young people with learning disabilities are excluded from receiving skilled support for their deafblindness. 

The new legislation will introduce a new duty on health professionals to inform parents and local authorities when they think that a child under compulsory school age has or probably has SEN. 

This is a significant duty for deafblind children as it is often health professionals who first identify problems with their vision and hearing, particularly since the introduction of the NHS Newborn Hearing Screening Programme. Professionals can improve levels of identification by doing the following:

Understand the characteristics of deafblindness

Many children and young people who are deafblind have a complex range of needs which can make it difficult to accurately assess their cognitive ability or the extent of their sensory impairment. For example, deafblind children and young people are often wrongly diagnosed as having learning difficulties or autism. 

Despite this, the child’s pathway to services is often determined according to the awareness of MSI by professionals. Professionals should therefore be aware of the characteristics and signs which may mean that a child may be deafblind. 

These may include: 

• Issues with both vision and hearing which are not fully corrected by the use of glasses or hearing aids.
• Adopting an unusual posture to undertake tasks – using residual hearing or sight eccentrically.
• Not responding as you would expect to sound and/or light (or a little response).
• Resistance to or avoidance of touch (tactile selectiveness).
• Using smell, touch, taste, balance and motion to gain information and make sense of the world around them.
• Needing a personal method of communication.
• Making actions that appear repetitive or stimulatory (these may be seeking information or regulating actions).
• Missing other’s attempts to initiate interaction and therefore appearing uninterested, or showing a preference for what is predictable and known, and appearing to be socially withdrawn or to have problems adjusting to changes.
• Delay in developing movement and mobility milestones and resistance to moving around unnecessarily, independently or without someone else being present.
• Delay in developing and generalising skills.

Agree a shared definition of deafblindness

In order to ensure that all deafblind children and young people are identified, it is important that local agencies agree upon a shared definition of deafblindness. Early agreement of a shared definition reduces disagreements and prevents delays of support being put in place. As a minimum, all agencies should adopt a definition of deafblindness that is consistent with the definition used in the Deafblind Guidance(5) and the SEND data descriptors. Deafblind awareness training is advisable for all professionals working with children and young people with SEND.

Use a dedicated survey

Once a shared definition of deafblindness has been agreed, a local authority officer or the local strategic lead for deafblindness(6) should seek to proactively identify children and young people by sending a dedicated survey to range of agencies including: 

• Special schools, nurseries and playgroups. 
• Child development centres/teams.
• Children’s centres.
• Special needs health visitors.
• Paediatricians and paediatric development centres.
• Children with disabilities social work teams.
• Audiology and ophthalmology services.
• Local SEN parent support groups. 
• Local branches of specialist voluntary organisations. 

A dedicated survey has been shown to be an effective tool in identifying deafblindness beyond pre-existing datasets.

Keep local SEND data up-to-date

Local authorities have a duty to ensure that registers of disabled children and young people, and particularly details of those with a vision or hearing impairment, are kept accurate and up-to-date.(7)

The Deafblind Guidance also provides local authorities with a legal duty to proactively identify children living within their geographical area and to keep a record of them.(8)

Local professionals should seek to improve the accuracy of data sets of disabled children and young people.(9)

In particular, ensuring that there is an up-to-date record of children and young with a vision or hearing impairment should be prioritised.(10) There should be regular cross-referencing of vision and hearing impairment registers to help identify children and young people with both a vision and hearing impairment. At present, many areas do not have adequate record-keeping processes in place about the number of deafblind children and young people living locally.(11)

Share information with other professionals

If agencies fail to share information about the needs of children and young people then this can lead to a delay in putting in place the support needed. Once a child has been accurately diagnosed as deafblind, effective cross-referral protocols between audiology, ophthalmology, social services, special education teams and paediatric clinics will be essential.

Assess

In the new SEND system, professionals from education, health and social care will be required to contribute to new coordinated assessment processes for EHC plans. 

They will also be involved in the process of drawing up EHC plans for the children and young people they support and designing outcomes. Where the child/young person applying for an EHC plan is deafblind, professionals need to find ways to do the following:

Conduct appropriate assessments

The unique nature of each child or young person who has MSI means that assessment is a complex process. This means it is not advisable to rely solely on medical examinations of the vision and the hearing as an assessment is also needed of how the combined sensory impairment affects each individual person. 

For this reason, a functional assessment should also be carried out to assess the extent to which the child or young person’s MSI affects their daily lives.(12) Many children and young people who experience MSI may have some residual vision and/or hearing. 

However, in all MSI children and young people it is the combined effect of their vision and hearing impairments that will limit their ability to interact and communicate, move around their environment and access information.(13)

Follow the Deafblind Guidance

The Deafblind Guidance states that deafblind children and young people must have their social care needs assessed by a specifically trained and experienced professional (this includes competency in knowledge, training and experience.)(14)

This means that when the assessment process for an EHC plan is carried out for a deafblind child or young person, any assessment of their social care needs must be carried out by a professional who is suitably qualified in deafblindness to meet the requirements of the law. Although the Deafblind Guidance relates only to social care, the child/ young person’s educational needs will be closely related to their communication and mobility needs.

Orientation, movement and mobility skills

• Use of vision and hearing
• Use of other sensesPhysical skills
• Orientation and mobility skills
• Communication
• Access to information
• Social skills and personal relationships
• Emotional, cultural and spiritual needs
• Health and medical needs
• Personal care/domestic skills, including eating and drinking
• Educational needs – including approaches to learning, curriculum support needs at school or college, adapted materials or specialist equipment, and the possible role of an intervenor
• Leisure needs
• Housing, including need for aids and adaptations
• Financial support
• Family and independence. 

Recommendations the assessment should make 

• Activities to encourage the child/young person’s development
• Teaching methods to be used
• Types of services that should be provided
• Support required such as intervenors, communicator-guides (including outside school for social involvement)
• Training needs for staff
• Additional activities such as holidays and local clubs which might benefit the child/young person.

Set appropriate outcomes

EHC plans need to be focused on the outcomes each individual child/young person is expected to achieve with short term targets and the support needed to achieve these outcomes. 

Outcomes should be accessible to the young person and their family and across disciplines so should be free from jargon, and be clear, concise and positive. The involvement of a professional who is suitably qualified to assess deafblind children and young people is very important to ensure effective appropriate outcomes are set.(15)

There are a number of measures which could be used to monitor developmental progress and objectives for deafblind children and young people. These include B-squared,(16) Routes for Learning(17) and the Victoria School MSI Curriculum.(18) A child’s health needs also need to be taken into account when setting outcome measures for EHC plans. For example, a child who is frequently in hospital or has a health condition that changes over time needs to have this reflected in their EHC plan.

Involve

To make sure deafblind children and young people are properly supported in the new SEND system, professionals should aim to do the following:

Support children, young people and their families to participate

The EHC plan process should put the deafblind child or young person and their family at the heart of planning. Person-centred planning techniques should be used to help ensure the child/young person is able to take as active a role as possible in the process and decision making.

Parents, carers and young people must be given the opportunity to be fully involved in the assessment process and encouraged and supported, if necessary, to make their contribution.(19)

Accessible information should be provided where appropriate depending on the assessed communication requirements of the individual. Children and young people with MSI must be supported to communicate their personal preferences as part of the EHC plan process and all information should be made available in a suitable format. Appropriate formats might include: 

• Braille
• Moon
• Large print
• BSL videos
• Audio
• Face-to-face communication.

Co-ordinate meetings and assessments

Deafblind children and young people often receive support from a large number of different professionals and agencies. For this reason, deafblind children and young people and their families would particularly benefit from the careful co-ordination of the EHC assessment process to minimise disruption and the use of a ‘tell us once’ approach, wherever possible.

Face-to-face multi-disciplinary meetings will be particularly beneficial for professionals working with deafblind children and young people to help them gain a holistic view of the child or young person’s needs whilst building good working relationships. 

Clear working protocols need to be developed at a local level so that agencies understand their roles and responsibilities to the child and their family, including who is responsible for delivering on different aspects of support outlined in the child or young person’s EHC plan.

Provide advocacy support

For the families of deafblind children and young people, plan co-ordinators should be used as a matter of course during the development of EHC plans, to help guide families through the new processes and co-ordinate the input of professionals. 

Due to the complex nature of deafblindness it is essential that there is continuity, with the same co-ordinator leading throughout the process. This will ensure that the co-ordinator has a good overview of the child’s needs and can hold each agency effectively to account. 

The families of deafblind children and young people should be made aware of their right to access independent information, advice and support from Independent Supporters. 

Where the child or young person has MSI, the Independent Supporter should have a good understanding of MSI as well as a good working understanding of how education, social care and health services operate.

Support

The types of services deafblind children and young people require will depend on the exact nature of their sensory impairments (including whether the child or young person was born deafblind or acquired the condition at a later stage) and any additional needs. The following services have been shown to meet deafblind children and young people’s needs and should be considered when recommending what support should be offered and part of EHC plans for deafblind children and young people.

Deliver specialist MSI education support

Schools should involve specialists, such as mandatory qualified teachers for pupils with MSI to help ensure that deafblind children and young people are able to access the curriculum and school environment. 

These are often based in external sensory support services. It will also be appropriate to provide support from specialist teachers of children with a vision impairment, Teachers of the Deaf and specialist teaching assistants or intervenors (see below) to provide advice on appropriate placements and any adjustments to the curriculum or classroom needed.(20)

Arrange 1-1 support

One-to-one support can help deafblind children and young people to access mainstream social and leisure activities. There are two main types of one to one support: intervenors and communicator-guides. 

The majority of deafblind children will require an intervenor, who plays a role in supporting the child’s development. An intervenor provides one-to-one support to congenitally deafblind children – enabling the individual’s social and personal development, encouraging their independence and facilitating their communication with the world around them. Intervenor support can be provided in the person’s home, in their local community, in an educational or vocational setting, or across several settings. 

Some children, particularly those who acquire deafblindness at an older age, will require the support of a communicator guide. Communicator guides assist with communication and mobility in everyday activities and support young people to remain independent.

Check appropriate social care support is available

Deafblind children and young people and their families should receive support from the social workers based in local authority Children with Disabilities teams. 

These teams provide a range of social care support for the child and their family including: practical assistance in the home; support in acquiring useful technology; help to access recreational and educational facilities outside the home; travel; home adaptation and access to short breaks.

Provide appropriate health care services

Deafblind children and young people should also receive support from a range of health professionals, depending on the nature of their impairments. This will often include professionals working in audiology and ophthalmology teams and speech and language therapists. Physiotherapists and occupational therapists can carry out sensory integration assessments. Paediatricians are also often involved with overseeing medical care and coordinating input from a range of health professionals.

Managing transition

Professionals working with deafblind children and young people in the new SEND system should pay particular attention to ensuring that they receive the support they need at key times of transition within the education, health and social care systems. This will ensure there is a continuity of care and support and should avoid the child or young person getting lost in the process of moving from one setting to another. 

Sense has information and advice on how to support the transitional moments in a young person’s development and education. 

When supporting deafblind children and young people approaching points of transition, professionals must do the following:

Plan for transition in a timely way

Every deafblind child or young person will have a unique range of needs and so it can take time for professionals to get a good understanding of what is required. This means that for transition to be successful, future arrangements for the child/young person need to be planned well in advance to allow professionals time to understand the child’s needs. It can often take significant amounts of time for deafblind children to build a trusting relationship with practitioners. 

For this reason, allowing enough time to consider the child’s needs at transition and put practical support measures in place can make a huge difference. Transition planning should be reflected in the services and outcomes included in EHC plans for deafblind children and young people as they move through the system.

Involve MSI specialists in transition planning

Input from MSI specialists into the transition planning process will be essential to ensure that the child’s unique support needs are properly identified and realistic plans for further education, work experience, leisure and housing can be formulated.

Take a person-centred approach

Children and young people should be placed at the centre of the transition planning process and should be fully involved in any decisions made. They should be supported to express their preferences and where appropriate, to take decisions for themselves. 

Young people who are over compulsory school age will have new rights to make choices about their own care and support. Professionals should seek to support young people and their families in this process, and help to mediate any disagreements between young people and their parents where these occur.

Use co-ordinators to provide support

Children and young people with deafblindness will engage with a number of local statutory and non-statutory services and they progress through childhood including education, social care, general health and specialist health care providers in addition to universal services.

For deafblind children and young people, the journey through childhood can be complicated by the fact that such a large number of agencies are involved in determining their need for support. For this reason, deafblind children and young people and their families should be offered advocacy and practical support from coordinators at key stages of transition.

Understand the Care Act 2014

Under the Care Act 2014, any young deafblind person who may have needs for adult social care at age 18 should have a transition assessment before they reach the age of 18. This includes young deafblind people without EHC plans, and applies whether or not they are currently supported by children’s social care.

This assessment should be carried out in accordance with the Deafblind Guidance by a person or team specifically trained and experienced in assessing people with MSI. Under the legislation, children’s social care services must not be removed until support from adult social care has been put in place. In some cases also, it may be appropriate for the young person to continue to receive services from children’s social care after the age of 18, and the legislation allows this to happen.

What is deafblindness/multi-sensory impairment?

Deafblindness is a combination of sight and hearing impairment that affects how you communicate, access information and get around. Being deafblind is recognised as a unique disability in its own right. It doesn’t necessarily mean that you are totally deaf or totally blind – most individuals who are deafblind have some residual sight and/or hearing. It’s not about the amount of sight and hearing you have; it’s about the combined impact of having more than one sensory impairment. Find out more about deafblindness. 

Under the Deafblind Guidance, persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility. This includes people with progressive sight and hearing loss.(21)

Children and young people with MSI have impairments of both sight and hearing. Many children and young people also face other challenges, such as medical conditions or physical disabilities. A very small number of children and young people with MSI are totally blind and deaf, but most have some useful vision or hearing. It may not be clear at first how well a child can see or hear and this can make diagnosis challenging.

MSI is very rare. A huge range of conditions can cause MSI and it can also be acquired after illness or injury. Some conditions may cause changes over time in how well children see or hear, or in their health or general development. Some may limit life expectancy.

How we use our senses

Our experience of the world comes through our senses. People with hearing and vision impairments don’t experience the world in the same way as sighted hearing people; their whole knowledge and experience of the world is different.

Sight and hearing are often called the distance senses because they give us information about what’s happening all around us. Touch, taste and balance are close senses, giving information only about what is happening now, within arm’s reach. Smell gives some distance information, but it is less useful to us than sight and hearing.

Sight and hearing provide most of the information we need to learn and function.

When one distance sense is impaired, information from the other can be used to compensate to some degree. This means that children and young people with either a vision or hearing impairment can use their more developed sense to keep in contact with the world around them. 

However, this is often not possible for children and young people with MSI. In addition, many children and young people with MSI have impairments of other senses. They may have poor balance, limited movement, be under or over-sensitive to touch or have a challenged sense of smell.

Children and young people with MSI need to get as much information as possible from any useful sight and hearing they have and from their other senses. For many children and young people, touch can provide a means of learning about the world and communicating. Some children and young people with MSI become very skilled in using their sense of smell, for example, and use it to identify people and places. Some recognise movement around them because of something as subtle as changes in air pressure on their skin. 

What does MSI mean for children and young people? 

MSI makes a significant difference to children and young people’s learning and development. Most will have difficulties with accessing information about what is happening around them. They are likely to struggle with communication, forming relationships and mobility. The level of difficulty they experience will depend on the extent to which they have some useful hearing and vision. 

Most children and young people with MSI will have specific needs in the following areas: 

• MSI makes children and young people learn more gradually, because they get information that is of poorer quality. This does not mean that they necessarily have learning difficulties/impairments. Learning through touch is much slower than learning through sight, and understanding visual or auditory information takes more time when you have a vision or hearing impairment. Nevertheless, children and young people with MSI can and do learn effectively.
• Initially, children with MSI may seem unresponsive to parent carers because they can’t see or hear the smiles, looks and speech that most babies respond to. They may sometimes seem to be unwilling to be held, especially if they have needed a lot of medical treatment, but most ‘tune in’ gradually as contact increases.
• Children and young people with MSI often take longer to learn to communicate. As they develop, they may use gestures, signs, objects or pictures to help them understand and make their wishes known. 
• Seeing their surroundings plays an important part in motivating most children to learn to move independently. Sight also motivates children to learn to use their hands. This is very important for children with MSI, who generally need to use their hands much more in exploring, learning and communicating than other children do. 
• Learning to explore their surroundings helps children and young people to understand and learn to control them. MSI reduces children and young people’s ability to anticipate events – to know what is likely to happen next. Children and young people with MSI often have difficulties generalising skills and knowledge from one situation to another, because they don’t see the similarities and differences between different situations. 

These are the big challenges that children and young people with MSI face. With appropriate support, however, they can learn to make best use of their sight, hearing and other senses, and develop the confidence to be inquisitive and interested in the world around them.

Getting in touch

We hope this guide has provided a useful overview of the key elements of best practice to consider when supporting deafblind children and young people and their families within the new SEN system. Sense regularly works in partnership with professionals to help them support children and young people of all ages who are deafblind.

If you have any questions or wish to find out more about the types of support available from Sense, please contact Sense’s Information and Advice team who will ensure you are put in touch with the most appropriate person. Email: [email protected].

This content was last reviewed in April 2022. We’ll review it again next year.