Children and Families Bill

Memorandum submitted by Sense (CF 55)

1. Introduction

1.1 Sense is a national charity that supports and campaigns for children and adults who are deafblind. Deafblind people have a combination of sight and hearing impairments which cause difficulties in a range of areas including communication, access to information and mobility.

1.2 There are a minimum of 4,000 children who are deafblind/multi-sensory-impaired (MSI) living in the UK. [1] Deafblindness is therefore classified as a low incidence special educational need and disability (LISEND). Children with acquired or congenital (i.e. from birth) deafblindness face enormous challenges in finding out about the world around them, learning to communicate, achieving independent mobility, engaging in education, community and social settings and forming relationships. Many will also have additional difficulties, such as learning disabilities, medical conditions and physical disabilities.

1.3 Sense welcomes the opportunity to submit written evidence to the Children and Families Bill committee. The following evidence reflects Sense’s expertise in supporting children with LISEND. It also reflects the views of the parents of Sense service users about the proposed reforms to the system of Special Educational Needs (SEN).

1.4 Sense is a member of the Special Educational Consortium (SEC) and supports the positions that SEC has taken on the broader aspects of the Bill.

2. Summary of key points:

· 2.1) Sense welcomes the overall aims of the Children and Families Bill. However, Sense considers that several clauses within the Bill should be strengthened to ensure that the provisions made will meet the specific needs of deafblind children and their families.

· 2.2) The Bill must be strengthened to promote more regular review and re-assessment of Education, Health and Care (EHC) Plans at key points of transition within the education, health and care systems.

· 2.3) Local Authorities should retain responsibility for the well-being of children and young people who receive services outside of their home Local Authority.

· 2.4) Early intervention is crucial for deafblind children and the legislation should allow full EHC plans to be available from 0-2 years old.

· 2.5) For children with complex needs, such as those with multi-sensory impairments, specialist assessment and service provision is extremely important and ensures that their specific needs are met.

· 2.6) Sense supports the creation of a Local Offer but considers that this should be underpinned by a national framework. It should also reflect that fact that provision can also be made on a regional or national basis.

· 2.7) For children with low incidence special educational needs, the bill should provide encouragement to Local Authorities to co-operate and jointly commission specialist services to meet need.

3. Transition

3.1 Deafblind children and young people often receive services from several different agencies and face several points of transition as they move through the system. Many of the families who receive support from Sense have faced difficulties when supporting their child to move from one service provider to another.

3.2 Many MSI children also receive services from a range of education, health and care services based across several local authority areas and this can make managing transitions even more complex. If transition points are not planned and co-ordinated properly, children do not benefit from a continuity of care or on-going access to the types of support they need.

3.3 As deafblindness is a low incidence disability, few professionals will have direct experience of working with children with multi-sensory impairment. Even where professionals have worked with deafblind children before, every child with deafblindness will have a unique range of needs and so it can take time for professionals to get a good understanding of what is required. For this reason it is essential that adequate time is built in to allow practitioners to fully understand the specialist needs of deafblind children when planning the next stage of their education or care.

3.4 Sense therefore considers that the Bill should be strengthened to promote more regular review and re-assessment of Education, Health and Care (EHC) Plans at key points of transition within the education, health and care systems. For consistency also, it is important that the clauses related to transition in the Children and Families Bill are consistent with those in the forthcoming Care and Support bill.

4. Local authority responsibilities for well-being

4.1 Sense is concerned that the Bill only requires a Local Authority to promote the well-being of a child or young person in its area and not when the child or young person is receiving services outside its area.

4.2 Due to the low incidence nature of deafblindness, specialist services are often based out of county and it is common for children to access services, such as specialist residential schools or expert centres for multi-sensory impairment, outside of their home local authority. Sense recently spoke to the parents of a twelve year old girl with CHARGE syndrome [1] who spent two years searching for a suitable secondary school for their daughter. They had hoped to find a place for her close to their home in South East London to avoid her having to board, but there were no options available in their borough. The family eventually decided that the best place for their daughter was at a school in Buckinghamshire, where she now boards.

4.3 For parents who have to send their deafblind children to schools far from home, it is vitally important that clear lines of accountability remain for children’s safety, participation and physical and mental health, regardless of where they receive services.

5. Early intervention

5.1 Sense also notes that the promised 0–25 system in effect appears to be focused on the 2–18 age range with entitlement to an Education, Health and Care (EHC) Plan being firmly attached to education.

5.2 Due to a lack of access to sensory information, deafblind children have a greater challenge to understand and learn about the world around them and can experience significant developmental delay from a very early age. The provision of early intervention, in the form of specialist communication and mobility support for congenitally deafblind/MSI children (from birth or onset of diagnosis), is vitally important to help children access future social and educational opportunities.

5.3 Sense considers that the bill should be place more emphasis on the need for early intervention. Specialist support should be made available from birth, rather than when the child begins school. We consider that as soon as a child receives a diagnosis this should be used to trigger the single plan process and an entitlement to specialist support services.

6. Specialist assessment and provision

6.1 Sense is concerned that the specific needs of children and young people with deafblindness may not be properly recognised and understood within the single assessment process. Sense practitioners on the frontline have found that there is often a lack of specialist expertise of deafblindness/MSI amongst practitioners in local authorities and that identification rates can be low. For this reason, local authorities often use generic assessment approaches which can fail to identify specific education, health and care needs and appropriate outcome measures for deafblind/MSI children.

6.2 Many parents who are in contact with Sense have struggled to access specialist support for their children’s highly complex needs. Many have experienced unsatisfactory assessments which have led to provision for their child which is inappropriate. For this reason, it is essential that professionals with recognised qualifications and experience in deafblindness are involved in the single assessment process if the child in question has multi-sensory impairment. This would mirror the current rules for assessment contained within the deafblind guidance. [1]

6.3 Due to the low level of professional awareness about MSI and the fact that each deafblind child has unique needs, parents are often the ‘expert’ in their child’s case. Parents in contact with Sense have expressed the desire to be consulted as part of the assessment process but feel strongly that the process should be overseen by a key worker rather than expecting parents to take on the stress of becoming the main ‘advocate’ responsible for securing the right support for their child.

6.4 We support the creation of a statutory responsibility for a co-ordinating key-working role to be embedded as part of the assessment process. We consider that key workers should not be employed separately to the professionals who are supporting the child, young person or family, but should be integrated into the wider roles of professionals supporting children and young people and families.

7. The Local Offer

7.1 The majority of parents in contact with Sense are very supportive of plans to introduce a local offer. Parents tell us that it can be very difficult to find out about the specialist services available to them and welcome efforts to introduce greater transparency. Many are of the view that local authorities currently deliberately fail to publicise information about specialist services due to the high cost of provision, including specialist schools and residential provision available out of borough. One parent told us, "I think it would help us a lot to have some clarity as to what services are going to be available to us for our child."

7.2 Despite this however, parents also have some concerns about the possibility that the Local Offer may create a ‘postcode lottery’ between different local authorities. Parents have told Sense that they do not want to be the only source of accountability for the quality of the Local Offer and other accountability mechanisms should be put in place. Parents would also like assurances that the local offer will contain services which will meet the needs of children with multi-sensory impairments.

7.3 Children with LISEND often receive little or no services from their local authority except in areas of good practice or where external-provided specialist support has been commissioned or where authorities have made specific provision for children with low incidence need such as deafblindness. These services are also extremely vulnerable to downward financial pressures due to their low incidence nature. We believe that a national framework linked to a regional offer would facilitate access to good provision.

7.4 On a related point, many families have told us that they consider that term ‘Local Offer’ is unhelpful, as most access services from a range of regional or national providers, as well as locally.

8. Regional commissioning

8.1 As part of the Local Offer of SEN services, Sense considers that the bill should promote a ‘regional offer’ of support services, which are co-funded by a number of local authorities across a geographical area. This is a cost effective approach and ensures that specialist provision is available to families across the region.

8.2 An example of successful collaborative can be seen in the West Midlands. The Victoria school provides specialist support for children with a range of SEN, including multi-sensory impairment. The school accepts children from across Birmingham but also serves as a regional facility for pupils with multi-sensory impairment, drawn from the five metropolitan authorities in the West Midlands.

8.3 Sense believes that a regional offer could be included to encourage local authorities to work together innovatively and make better use of resources thus creating provision for children and young people with a LISEND. This is not exclusive to deafblind children and would include children with single sensory impairments. Arranging services on a regional basis gives the service sustainability, stability and the flexibility to plan and develop service provision in the future.

March 2013


[1] Robertson, J., and Emerson, E., Centre for Disability Research (2010) Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK London : Sense

[1] CHARGE is a rare and challenging genetic condition that can affect the e ars, eyes, heart and nose and is recognised as the leading cause of congenital deafblindness.

[1] The guidance, Social Care for Deafblind Children and Adults , was issued by the Department of Health in 2009 and the Welsh Assembly Government in 2001. The guidance is to make sure deafblind people receive the support and services they require from their local authority. For more information see: http://www.sense.org.uk/content/deafblind-guidance

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Prepared 22nd March 2013