Support and Aspiration: a new approach to special education needs and disability

Consultation response from Sense 

Sense
With over 50 years of experience, Sense is the leading national charity working with, and campaigning for, children and adults who are deafblind. Sense provides expert advice, support, information and services for deafblind people, their families and professionals.

Deafblindness 
Deafblindness is a combination of both sight and hearing difficulties. The complex impact of dual sensory loss means that it is a unique disability. Deafblind people need support with communication, access to information and mobility. Based on independent research, there are an estimated 365,000 deafblind people in the UK.   

There are many causes of deafblindness. These include premature birth, birth trauma and rubella during pregnancy, which can cause babies to be born deafblind. Some genetic conditions also result in deafblindness. Any of us can become deafblind at any time through illness, accident or as we grow older. People who are born deafblind often have additional disabilities, including learning and physical disabilities. Usher syndrome is a major cause of deafblindness in adults.

There are three common terms for people with co-occurring hearing and visual problems: deafblindness, multi-sensory impairment and dual sensory impairment (the later is less frequently used, particularly with children). There have been attempts to distinguish these terms from each other ,  but for this document we are using the terms defined by DfE / DOH of ‘multi-sensory impairment (MSI)’ and ‘deafblindness’. Terms should be regarded as synonymous, unless any distinction is made. 

A commonly used definition in the UK is that “a person is regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss.”

Deafblind children are defined as: “a heterogeneous group of children who may suffer from varying degrees of visual and hearing impairment, perhaps combined with learning difficulties and physical disabilities, which can cause severe communication, developmental and educational problems. A precise description is difficult because of the degrees of deafness and blindness, possibly combined with different degrees of other disabilities, are not uniform, and the educational needs of each child will have to be decided individually.”  

Children with multi-sensory impairment are defined as having: “a combination of visual and hearing difficulties. They are sometimes referred to as deaf blind (sic) but may have some residual sight and/or hearing.  Many also have additional disabilities but their complex needs mean that it can be difficult to ascertain their intellectual abilities.” 

People do not necessarily label themselves and so a child or young person may not identify or define themselves as being deafblind.  They may say they don’t see or hear too well, or identify with particular causes of sight and hearing loss (e.g. Usher, CHARGE) or see other disabilities or complex health problems as more significant.  However, if the way they see and hear has a significant functional impact on communication, education and development, access to information or mobility it is important to recognise and respond to an individual’s sensory loss.

1.	Early Identification and Assessment


Section 1 - Summary of recommendations

1.	General practitioners and health visitors are provided with better information about deafblindness and the specialist support that is available in a local area.

2.	Awareness about low-incidence conditions such as deafblindness is raised among GPs and other health professionals, and that the pathways into specialist services are clearly marked.

3.	Local authorities and health planners ensure that professionals coming into contact with the assessment and statementing process for children with SEN understand the challenges of having a multi-sensory impairment.

4.	The proposed single plan makes explicit the levels of support a child needs, who is responsible for delivering the support, and the funding source responsible for purchasing the agreed support package.

5.	A lead agency should take responsibility for co-ordinating the production of the proposed single plan and a single-point-of-contact is clearly identifiable throughout the assessment process.

6.	If Health and Wellbeing Boards are the intended body responsible for co-ordinating the single plan a lead agency is clearly identified to manage discussions about resource allocation in the single plan.  

7.	A single statutory route for redress needs to be created that can adjudicate disputes between agencies where they risk undermining the delivery of a plan, as well as offering parents a single route for obtaining redress and holding agencies to account.

8.	Assessment for multi-sensory impairment becomes a specific element of the proposed single assessment process.

9.	In line with the Department of Health statutory guidance, only a “person who is specifically trained” should carry out the assessment.  

10.	 Agencies supporting deafblind children and their families put the wishes and aspirations of deafblind children at the centre of their decision making processes. 

11.	The single plan is supported by a funding mechanism that allows agencies to pool budgets in support of effective integrated planning.

12.	The duty to cooperate between education and other services is retained. 

13.	All professionals involved in the assessment of SEN and those who work with children with a statement of SEN are supported to recognise the challenges of working with multi-sensory impaired children in the classroom.  


Sense welcomes the review of SEN and the commitment to improve the identification of special education needs.  Sense works within schools and early years settings to support teachers, teaching assistants and intervenors to work with children and young people with complex disabilities that result in multi-sensory impairment. 

Our work within early years settings means that as an organisation we are often involved with families as soon as they suspect that their child may have multi-sensory impairment, or as they progress through the statutory assessment process. 

Question 1: 	How can we strengthen the identification of SEN and impairments in the early years, and support for children with them?

The current process for identifying co-occuring sensory impairments in neo-natal and very young children and the associated SEN in early years setting faces two significant barriers: 

•	First, identifying the medical conditions underlying deafblindness, or multi-sensory impairment (MSI), is complicated by the low incidence and variability of causes – especially where the cause of deafblindness is unknown. Where the cause is known, such as with Usher syndrome, and CHARGE syndrome – these are relatively rare conditions.  The degenerative nature of some conditions, including Usher, mean that sensory loss may increase as a child develops and the child may not present as multi-sensory impairment until much later in childhood; 

•	Second, the low incidence of these conditions means that there is a considerable and widespread lack of awareness of how multi-sensory impairment creates a specific special education need for the children experiencing MSI.

For deafblind children under the age of five a number of barriers exist that prevent the effective identification of the conditions that can be responsible for learning difficulties in childhood: 

One barrier is that there may be a number of complex elements to the child’s condition, leading to a high number of professionals that parents of deafblind children come into contact with once a child is born. This can complicate diagnosis and may delay referral into specialist services. For instance, a recent Sense survey of parents of deafblind children found that:

?	Parents’ initial concerns about deafblindness involved eight services, including but not exclusively involving health. 
?	While hospital doctors offered the most common route to identifying a condition as likely to generate special educational need in childhood (with 36% of responses), others included: nurse; midwife; parents of other deaf children; health visitors; consultant on maternity ward.  

One parent informed us that their route into a specialist assessment was through an ophthalmology consultant, who:

“saw my child after she failed a routine field vision test. I told him I was suspecting Usher. He said he thought I was probably right. I came home and rang Sense!”.


Sense recommends: 

•	General practitioners and health visitors are provided with better information about deafblindness and the specialist support that is available in a local area. 


A further barrier to identification is the complexity and rareness of the underlying conditions that could lead to complex learning needs in later childhood. In one of the responses to Sense’s parent survey we were told by a parent of a child under the age of five that, “Doctors didn't believe me” when initial concerns about a visual or hearing impairment were raised, and that a health visitor referral provided the eventual route through which assessment was obtained. 

From our experience of working with parents and deafblind children the nature of the conditions generating deafblindness, the lack of understanding of these, and their implications for SEN, all present a significant barrier to obtaining support.   Where this happens, reliance on other, non-medical, sources of information is often required. 

Evidence from a recent case survey analysis of a sample of forty-two live cases that Sense undertook supports the need for wider information to be made available on low-incidence medical conditions related to SEN. In our analysis we found that advice and information on deafblindness and its implications for children was the most frequently referenced help that Sense provided, with 50% of the examples extracted from the survey falling into this category. 

The path that very young deafblind children take into services is often complicated by underlying conditions and whether the cause of their deafblindess is a congenital one or acquired later (for instance caused by meningitis or accident), or the result of a degenerative condition. This can have implications for the assessment process and the support that families require.  

Diagnosis is not always a straight-forward procedure, or even a single process due to the complexities of needs that are often presenting. The result can be that diagnosis of deafblindness is a process that evolves over time.  


Sense recommends

•	Awareness about low incidence conditions such as deafblindness is raised among GPs and other health professionals, and that the pathways into specialist services are clearly marked.


Question 2: 	Do you agree with our proposal to replace the statement of SEN and learning difficulty assessment for children and young people with a single statutory assessment process and an ‘Education, Health and Care Plan’, bringing together all services across education, health and social care?

Sense cautiously welcomes the proposal to bring health and social care services into a single assessment process and plan alongside the education support currently recorded in the statement of Special Education Needs.  

Given the current issues surrounding the assessment and statementing process for children and young people with MSI, it is not clear how bringing together health, social care, and education services into a single planning and assessment process will improve on the existing process for obtaining support.  

Over half of all responses about the statementing process in Sense’s recent survey of parents cited a delay in obtaining a statement - rising to 57% of parents of children in the early years age group as children approach statutory school age. This is particularly concerning because the average delay of 7 months (ranging from 2 to 12 months) occurs at a crucial stage in their development, when both child and family need skilled and knowledgeable support. 

A significant barrier to the effectiveness of the current assessment and statementing process is the lack of awareness and understanding of MSI and its implications for children among the professionals they come into contact with. Overall, 87% of responses about the quality of the assessment processes cited a lack of understanding of deafblindness or multi-sensory impairments as a reason for a delay in obtaining a statement. 45% of responses from parents of children in the early years cited a lack of understanding of MSI as a primary reason for delaying the statement, including one parents who reported: 

“Resistance to putting access to [a teacher with the Mandatory Qualification in teaching children with MSI (deafblindness)] on the statement”. 

A lack of confidence in the quality of assessors appears to be a repeated theme over the course of a child’s engagement with compulsory education.  This was illustrated by parents of older children (11-15) responding to Sense’s survey. A lack of knowledge of MSI and deafblindness was reported in 50% of responses.  

Of real concern to Sense is the lack of specialist knowledge about multi-sensory impairment in general, and the larger groups affected by deafblindness - Usher and CHARGE syndrome.   Children and young people with any condition causing multi-sensory impairment require highly skilled staff and personalised support to enable them to engage effectively with education. Parents in our survey regularly told us (in 63% of responses) that the most common experiences that they had, regarding assessment of children in the Usher and CHARGE groups, was a lack of understanding by staff of MSI as it relates to those conditions. 

Comments about the lack of awareness of MSI such as the following are not uncommon amongst the parents that Sense works with: 

“Sadly our local sensory teachers had no experience of Usher syndrome. At the first school planning meeting after confirmation of Usher it was agreed to hand over the drafting of the Statement of SEN to the Sense deafblind education specialist that I myself had drafted in because no professionals locally knew what to do!”

“[professionals] Not understanding CHARGE and its impacts on my son, not seeing that he is multi-sensory impaired [instead] taking his deafness and visual impairment as 2 separate issues” 

“a distinct lack of understanding within the LEA about additional medical needs affecting education and lack of placement with specialist help in medical areas compounding the issue”

“social services have been useless in support. To the point of lying…  We have had to fight hard to even get someone from social services to come and visit us.”

The lack of awareness about MSI within the clinical practitioner community was raised separately by Sense practitioners in a number of focus groups held to discuss the proposed reforms to the SEN system. Practitioners, for instance, questioned the level of qualification necessary to ensure that those assessing children under the proposed reforms can accurately identify the special education needs of children. 

In this context Sense has a number of concerns about the working arrangements that will generate the single assessment and Education, Health, and Social Care Plan:

Given the wide range of impairments that require a statement of special education needs, delays in assessment will remain a feature of the process of obtaining a statement unless the expertise required to identify low-incidence impairments is guaranteed to be made available to the relevant professionals. 


Sense recommends:

•	Local authorities and health planners ensure that professionals coming into contact with the assessment and statementing process for children with SEN understand the challenges of having a multi-sensory impairment..  This may be through pooling resources to establish a critical mass to provide access to those with the appropriate skills and training. 


Determining the appropriate level of support required for children with MSI involves recognising the nature of the barriers to learning that MSI creates for children.  The experience of multi-sensory impairment is qualitatively different from either visual or hearing loss. This is recognised by the Department of Health, who acknowledge that people with co-occuring hearing and visual impairment, however profound or slight, have an impairment:

 “in which one sensory impairment impacts upon, or compounds the second impairment, which causes difficulties, even if, taken separately each single sensory impairment appears relatively mild” (Social Care for Deafblind Children and Adults, 1995).  

Despite both Departments of Health and Education recognising deafblindness/MSI as a unique disability including the release of Department of Health statutory guidance on identification and assessment, the Green Paper is surprisingly vague on how health and education specialists will work together in producing a single assessment.  

If the proposed Health and Wellbeing Boards is the intended forum, how will professionals be supported to work together in identifying the needs of children with impairments that, despite being relatively rare in the population, create specific challenges for professionals working with them? In light of the proposal to remove the statutory duty for schools to co-operate with local health and social care providers the following concerns have been raised in practitioner fora held to discuss the proposed reforms: 

1.	Thresholds – despite statutory guidance, under both the Deafblind Guidance, the current statistics exemplify the low recognition and identification of deafblind/MSI children and young people. The lack of knowledge of MSI as a specific impairment raises the potential for different agencies to fix the support they agree to provide at different levels. Sense practitioners working with schools to support deafblind children and young people with MSI identified that the very complex health and social care needs could introduce a bias in the care plan towards these and away from education support. This may happen, for instance, if educational professionals did not accept the case for supporting a child with complex needs in an education setting. An additional concern is that the complexity of assessing MSI children and young people does not support a ‘one assessment’ model that allows the child’s needs to be identified easily.  It is Sense’s experience that a picture needs to be built up over time, across settings and involving skilled assessors. Sense believes that there is a strong requirement for an assessment standard and pathway available for health professionals to use in assessing MSI children and young people. 

For this reason, the single plan will only improve on the current assessment and statementing process if levels of support are clearly identified and assessors are made aware of the challenges facing children with MSI in education settings. Without agreement at the start and a commitment to provide the support necessary, in a way that is consistent with the needs of a child, the proposed single plan and assessment process risks replicating the current situation where section 5 and 6 of the statement are not applied uniformly because there is no binding agreement to do so. 


Sense recommends:

•	The proposed single plan makes explicit the levels of support a child needs; who is responsible for delivering the support; and the funding source responsible for purchasing the agreed support package. 


2.	Lack of a lead agency – Sense practitioners working in schools with children with low-incidence and complex needs pointed to the need for the single assessment process to have a strong lead agency co-ordinating input and, crucially, adjudicating in local resource disputes. The experience of practitioners working in existing multi-agency assessment processes, such as the Common Assessment Framework (CAF) is that:

“following this through in practice is really difficult, so … how do you get large numbers of professionals involved with any one child to work effectively in this essential collaborative way?” 

A lead professional is an essential part of the process of successfully creating a multi-agency approach to the proposed single plan.  One Sense practitioner with experience of working with current assessment process recognised that the: 

“Recruitment of a coordinator is needed and time allocated within this post – as opposed to placing pressure on already over stretched professionals [and] who is not biased in any particular area…”

“[a co-ordinator] …does not need to have in-depth knowledge about MSI but does need to know who to draw in…” 


Sense Recommends 

•	A lead agency takes responsibility for co-ordinating the production of the proposed single plan and that a single-point-of-contact is clearly identifiable throughout the assessment process. 


Question 3: 	How could the new single assessment process and ‘Education, Health and Care Plan’ better support children’s needs, be a better process for families and represent a more cost-effective approach for services?

Sense has a number of concerns about the ability of health and education in particular to work together in the interests of children and young people with the most complex impairments. Sense believes that the process through which support for children with SEN will be determined and agreed by agencies is vague. With little reference to a body responsible for co-ordinating the single assessment and jointly developing the Education, Heath, and Care Plan it is not clear, for example, how the proposed process will work in favour of children with complex health, care, and education needs such as those represented by groups rare conditions such as CHARGE Syndrome, CMV, or Cornelia de Lange syndrome. We believe that this is a significant omission in the context of the proposal to repeal the duty to co-operate in the Education Bill 2011 and the development of the Health and Wellbeing Boards in the Health and Social Care Bill 2011.

The ability of the proposed education, health and social care plan and single assessment to deliver improvements to the current system is dependent on agencies working together to identify the needs of children with the most complex impairments.  One reason for this is the nature of the conditions underlying low-incidence impairments such as deafblindness. Medical conditions requiring surgery such as gastrostomy (feeding tubes inserted into the stomach), swallowing difficulties, sleep disorders, and associated breathing problems are not uncommon in children and young people who are deafblind. 

This is supported by comments from practitioners working in special education settings for deafblind young people and adults: 

“The implementation of the single statutory assessment whilst a welcome move would need to be supported by legislative duty on local authorities to participate and fund outcomes; otherwise in this time of reduced resources the implementation could be weakened through non-participation of key individuals…”.

It is precisely because of their complexity and rareness that these conditions present challenges for professionals in correctly identifying the needs these children have in each of the areas the proposed plan will cover. This is a current problem for parents under the existing system, and it is not clear how – without a strong lead agency to manage discussion about resource allocation – the plan will address common problems that parents currently face. This is particularly concerning for all children with low-incidence conditions including complex sensory needs since these can present particular challenges for assessors.  One parent in our survey for instance reported that their local authority had tried to provide spurious reasons for not conducting a statementing assessment, claiming “…they didn't do assessments due to funding, then they said that we had to ask for it at my child's next review.”  


Sense recommends 

•	A lead agency is clearly identified on Health and Wellbeing Boards to manage discussions about resource allocation in the single plan.  


Where assessments do not correctly identify a child’s needs this can lead to placement in an inappropriate education setting.  This is a useful indicator to show how the existing process can fail to support a child’s needs as well as identifying those areas where support from other agencies is absent.  Parents responding to our survey frequently cited the lack of an appropriate education placement as a particular concern (with 43% either unsure or certain that the education placement was inappropriate). Whilst over half of all parents with deafblind children felt that the placement was an appropriate one, significant differences emerged when broken down by the age of the child. Only two parents of younger children (0-5) with multi-sensory impairment reported that they thought that the education setting was appropriate for their child’s needs. 

The right education placement, with the correct level of individual and specialist support within that placement is significant given the importance of equipping deafblind children at this age with the skills to develop an understanding of their world. Through our work  with the MSI Unit at Victoria School and Specialist Arts College in Birmingham who have developed  a curriculum for deafblind children which has been jointly published by Sense.  Sense understands the challenges of supporting deafblind children and young people whose development is very different from other children. For example, it is not untypical for children who have a combined sight and hearing impairment to show delays in communicating and developing relationships, as well as conceptual issues such as understanding time and place in relation to themselves and the world around them.   Quality of assessment, and the subsequent placement in an appropriate educational setting, with appropriate specialist support, and adapted curriculum content and approaches are crucial if deafblind children are to avoid negative outcomes associated with delays caused by their needs being unaddressed. 

Currently there are limited numbers of specialist provisions, these are more often provided as regional provisions to ensure that there is critical mass of deafblind children as well as sustainability of qualified and skilled staff. 

A further concern is that the reforms are vague on how parents would obtain redress for the failure of services providers to properly assess the non-educational needs of a child.  Non-educational needs are currently recorded in sections 5 and 6 of the statement. Under the current system, parents can appeal the recording of a health or social care need in section 5 or 6 if they feel that it is essential to enable their child to access education - and that it should be recorded instead in sections 2 and 3 (where the local authority has a statutory duty to meet the terms of the statement). However, the Green Paper is unclear on how, under the new proposals, a dispute about service provision for non-educational needs should be appealed.  This raises the risk that a child with a complex condition might experience delay in accessing education services as a crucial stage in their cognitive or social development. 

Similarly, a further risk occurs if assessment results are informally ranked in priority according to the assessors understanding of a child’s impairments. Where this did happen, the assessors understanding could be used to determine the perceived ‘most significant’ challenge facing the individual.  Comments from sense practitioners working in the SEN field point out the risk: 

“Programmes based on such an assessment may not give sufficient focus to MSI. Proposals to limit the outcome of the assessment to a single SEN category may reinforce the point above and could ultimately lead to a situation where reduced resources in the SEN field would be prioritised to the `most significant` challenge. The impact on the learner could be that future learning is inhibited in these circumstances”.


Sense recommends: 

•	A single statutory route for redress needs to be created that can adjudicate disputes between agencies where they risk undermining the delivery of a plan, as well as offering parents a single route for obtaining redress and holding agencies to account. 


A single Education, Health, and Care Plan will therefore only add value to the assessment and statementing process if there is sufficient incentive for agencies to recognise the broad range of needs required by children with very rare, but complex, conditions, if they are to have a meaningful education experience. However it is Sense’s experience, as reported by parents, that these needs are not uniformly acknowledged across all of the agencies currently involved with a deafblind child.  While many parents of deafblind children are satisfied with the educational setting their child attends a (for example of the parents who answered this question 58% felt that their child was in a suitable education setting) those who have expressed a dissatisfaction cite issues such as a lack of adequate teaching support; inadequate equipment; concern about a lack of adequate opportunities for their child to participate in school life; and that staff lacked skills to communicate with their children. 

Question 4: 	What processes or assessments should be incorporated within the proposed single assessment process and ‘Education, Health and Care Plan’?


Sense recommends 

•	An assessment for multi sensory impairment becomes a specific element of the proposed single assessment process. 


We do not envisage the single assessment replacing all specialist assessments. However, we recognise that there is a need for assessors to be aware of the specific challenges facing deafblind children as they engage with education services. This is based on evidence that under the current assessment and statementing process assessors consistently fail to recognise the impact of MSI for children on their ability to make sense of their world. Including a deafblind assessment into the single assessment process is consistent with the status of deafblindness as a recognised, and unique, disability by the Department of Health’s deafblind guidance (LAC (DH) 2009 (6)). According to this:

“Persons are regarded as deafblind if their combined sight and hearing impairments cause difficulties with communication, access to information and mobility”.  

As highlighted above, parents of children with deafblindness share a common concern that professionals working with their children fail to recognise the specific challenges of a combined sight and vision loss. One of the biggest issues affecting the quality of assessments is the training and awareness of staff. The Sense assessment tool: Deafblind Guidance: Sense Assessment Framework for Deafblind Children and Young People provides some useful principles and practice guidelines that we believe would enable the single assessment process to identify the needs of deafblind children. 


Sense recommends:

•	In line with Department of Health statutory guidance, only a “person who is specifically trained” should carry out the assessment.


Amongst the principles that Sense recommends become embedded in the proposed single assessment, professionals should:  

•	Seek and take into account of, where possible, the views of the child/young person and, in particular, opinions of needs and the support required. 
•	Take into account the views of the child’s/young person’s family from the view of their family and carers.
•	Record these views and use them to assist the assessment
•	Take account not only of present needs, but those that will occur in the foreseeable future.
•	The assessment should be conducted in an environment familiar to the child/young person, with the possibility of extending this if the assessor thinks it appropriate.
•	Adopt a holistic view of the needs of deafblind / MSI child and young person.
•	Ensure that assessment follows the individual and be guided by the young person’s interests and motivations.
•	Hold a long term view. 
•	Account for learning styles and accessibility.

Question 6: 	What role should the voluntary and community sector play in the statutory assessment of children and young people with SEN or who are disabled? How could this help to give parents greater confidence in the statutory assessment process?

The relative low-incidence of deafblindness in the UK means that professionals are unlikely to encounter many cases of multi-sensory impairment over the course of their careers. It is estimated by the Centre for Disability Research (CeDR) that there are a minimum of 4,000 children who are deafblind, and who will therefore require access to specialist assessment as they engage with education.  The low incidence of conditions such as CHARGE syndrome (3.5 per/100,000 live births) and Usher Syndrome (up to 17 per/100,000 live births) means that the specialist skills required to provide quality assessment to children with deafblindess are unlikely to be developed in the general education, health, or social care workforces without support from organisations such as Sense.  

Third sector organisations can play a significant role in supporting local authorities and service providers to engage with hard to reach and low-incidence groups. Sense, for example, has a well-developed offer based on the development of high quality assessment and the provision of specialist services to meet the needs of deafblind children in a range of educational and social care settings. Organisations such as Sense are often well placed to support local government and other agency partners. For instance, there are often specialist services that local agencies lack the knowledge and expertise to deliver – for example specialist communication support for deafblind children such as intervenors or communicator guides.  These can also be difficult to source in a local area because of the low incidence of deafblindness as a disability therefore joint working arrangements across local authorities may be required to ensure that provision is available. 

Whilst the third sector has a role to play in supporting children and their families to ensure that needs are identified and met as well as providing value added opportunities for families to mutually support each other and offer short break opportunities.  It needs to be recognised that the third sector should not be in the position to replace statutory duties of local authorities.  Where the third sector supports statutory duties sufficient resources should be made available to undertake these roles. 

Sense’s experience through the Sense College represents an example of how voluntary sector organisations can work with and support local authorities and statutory agencies at the local level: 



Case Study – Sense College

Sense College has forged good partnerships with local special schools which support transition into the college and provides experiential one day college placements for learners during their final school year. Often these relationships have been in place for several years due to our knowledge of the children involved through our work with Sense Children’s Services. We work closely with local Connexions officers to identify appropriate transition destinations for children with MSI in their last years of school.  We have good working relationships with local learning disability teams that ensures a level of consistency in the specialist support children receive when they move into adult services and reinforces any support children and young people may need e.g. in safeguarding issues.

The college also works with local general further education (GFE) colleges to jointly support young people who have the ability to be in a GFE environment. In these circumstances there is close liaison on the education, health and care needs of the young person and a person centred learning program would be designed and developed supported by Sense staff specialist expertise.  


Question 7: 	How could the proposed single assessment process and
‘Education, Health and Care Plan’ improve continuity of social care support for disabled children?

Sense welcomes the commitment in the Green Paper to developing a holistic approach to the delivery of the single plan, as well as the commitment to ensure that barriers to transition into post-16 services are addressed.  We agree with the extension of the plan to age 25 as one way of ensuring that there is a single framework to manage the move into adult services.  Sense also believes that bringing separate agencies into a single process can have a positive impact on outcomes for deafblind children given the high level of health and social care that is required to ensure that the education experience is a meaningful one. 

However, Sense has a number of concerns about the workability of the process.
If continuity is a criterion of success for the single plan, agencies must have a clear commitment to delivering consistent levels of support across the three service areas the plan covers. 

We note a lack of any reference to meaningful participation by children and young people themselves in the planning process. Given our experience of supporting young people with complex needs arising out of deafblindness we understand the importance of involving young people themselves and how providing opportunities for deafblind people to have a voice can lead to clearer objectives for the plan – and better outcomes for the young person. 


Sense recommends:

•	Agencies supporting deafblind children and their families put the wishes and aspirations of deafblind children at the centre of their decision making processes. 
 

Sense notes the recent Law Commission report into Adult Social Care and the recommendation to create, in future social care legislation, an enhanced duty to co-operate between children and adult social care services. Sense accepts the Law Commissions basic position, that: 

“ The existing overlap in [children and adult social care] law creates an awkward relationship between adult social care and The Children Act. At consultation there was widespread confusion amongst service users and professionals over which legislation can apply to children and which can apply to adults.” 

In the context of a single plan including social care Sense broadly accepts the findings of the Law Commissions report and believes that the extension of statutory duties to co-operate will improve the integrated working across adult and children’s services requires to avoid gaps in assessment and provision. In particular, Sense accepts the Law Commissions main recommendations, including in relation to transition, recommendation 58, to: 

“(1) introduce an enhanced duty to co-operate, which should include specific provision to promote co-operation between relevant organisations when a young person is moving from children’s to adults’ services;”

“(2) give local authorities a general power to assess and provide services to 16 and 17 year olds under the adult social care statute;” 

Sense believes allowing 16 and 17 year olds the ability to request an early assessment by adult services this would allow a more managed transitions out of children’s services and help to avoid the situation where a young person reached 18 without the relevant support having been agreed, and support the Government’s objective to improve continuity between service planners. 

Sense has already pointed out above that the lack of a strong lead agency responsible for determining the service offer in an individual plan raises a risk that agencies could impose different eligibility thresholds for accessing services, and ultimately work against any continuity. Again, as noted above, the repeal of the duty to co-operate between education providers and other local agencies risks undermining the ability of agencies to plan consistently for a young person’s needs where these are particularly complex.  Deafblind children for instance often have a requirement for a high level of health care to enable them to access other services such as education. 

The experience of Sense is that this can work best when joint services are supported by pooled budgets. 


Sense recommends:

•	The single plan is supported by a funding mechanism that allows agencies to pool budgets in support of effective integrated planning.

•	The duty to cooperate between education and other services is retained. 

This is the experience of one of our practitioners who reported: 

“Where [joint working has] worked effectively, joint funding from health, social care and education to appoint a ‘Team around the Child’ Coordinator – [a] designated role recognised by all parties.” 

Sense welcomes the recognition of the gaps in service provision that can arise for young people with complex needs as they make the transition into adult services. We welcome the extension of the single plan to age 25 as this will help to avoid young people meeting a ‘cliff face’ in service provision if assessments have not identified their ongoing needs as adults.  Early assessment, with contributions from all agencies involved remains a key factor in ensuring that the barriers to transition are not simply pushed forward into later adulthood after age 25. In our survey of parents who had supported a deafblind young person through the transitions process only half had received some form of guidance on the availability of local services.  In this context parents responding to our recent survey recommend: 

“Assessments by suitably qualified professionals and due regard given to [the] deafblind guidance; something badly lacking in our family's experience”. 

“Joint working between [the] learning disability (LD) team and sensory impairment; when a young person is with the LD team the sensory team expertise isn't sought which leads to lack of understanding of LD and deafblind needs.”

 “Comprehensive information on available and suitable provisions.”

“Early contact with adult care services with a named worker for my child who can guide us through the transition process”

The need for agencies to work together and cooperate in planning the service needs of young people as they move towards transitions age is echoed by Sense practitioners working with deafblind children: 

“guidelines [are put in place], commencing with the transition reviews [and] ensuring that connexions and social services attend educational reviews”

Continuity in service provision across the agencies involved in delivering the single plan, as well as between children’s and adult services, is dependent on giving a voice to deafblind children and young people in the planning process.  Participation of children and young people is an essential part of the transitions planning process and is consistent with the commitment in the Education, Health, and Care Plan to specify the learning and life outcomes that parents and deafblind children aim for. Sense has experience of working collaboratively with parents and service providers to ensure that the voices of deafblind young people moving into adult services are heard. Getting a Result! is Sense’s guide for practitioners to support them through the transitions assessment process. This material is aimed at professionals and Connexions staff – and is based on the principle that parents and deafblind children themselves understand the issues and young person’s needs.  

Question 9: 	How can we make the current SEN statutory assessment process faster and less burdensome for parents?

Sense believes that the current system for obtaining SEN assessments is compromised by the lack of understanding of low-incidence impairments, such as deafblindess, within the workforce. For instance, parents responding to our survey as part of the consultation process have consistently told us that a barrier to affective assessment is the lack of knowledge and awareness of deafblindness amongst the professionals they come into contact with. This means that, in making decision about the services and support that deafblind children require, professionals can make avoidable errors – for example, by treating multi-sensory impairment as a sum of individual sight and hearing loss, rather than a unique condition in its own right. Not recognising the uniqueness of deafblindness risks missing consequences that can inhibit access to learning and skew developmental processes.  This can lead to needs remaining unacknowledged and delays in accessing services – as was the case for 52% of responses from parents citing a delay in assessment and 87% citing a lack of understanding of deafblindness or multi-sensory impairment amongst professionals conducting them. One result can be a delay in obtaining the support necessary for a deafblind child to develop necessary skills such as the ability to communicate. 

One parent for instance has told us: 

“In the early stages of our son’s development there was no input with regards to his communication. His 'general' development seemed the priority. Looking at how he responds to hand under hand [a form of communication used by deafblind people where the deafblind person themselves leads the conversation] signing now I feel like we missed out on 6 years of communication skills”

And: 
	
“Our son needed more intervention earlier on. It was only with Sense's support that we got the MSI input he needed. If Sense hadn't been there I am sure our fight would have been a lot harder.”


Sense recommends: 

•	All professionals involved in the assessment of SEN, and those who work with children with a statement of SEN, are supported to recognise the challenges of working with multi-sensory impaired children in the classroom.  


2. Giving parents Control

Sense answers questions 10; 11; 12; 13; 14; 16; & 17


Section 2 - Summary of recommendations

1.	Within each of the four classes of information: curriculum; teaching; assessment; and pastoral support schools describe very clearly the additional provision and support the school will provide in order to ensure that where a parent selects a school on a statement they will be supported to engage fully in the life of the school.   

2.	Any decision is made on the extension of personal budgets to education support services the Government looks closely at the impact that this would have on low incidence impairments.  

3.	The responsibility for funding and developing specialist services for disabled children with very low incidence conditions must be retained by local authorities. 

4.	Children, young people, and families must have a choice as to whether they receive direct payments, or a service.

5.	The system of allocating resources for direct payments, individual budgets, or personalised budgets must take into account of the costs of specialist communication support.

6.	The markets for low incidence support services in a local area must be sufficiently developed before direct payments are offered to deafblind children and their families.

7.	Inclusive Schooling strengthens the role of parents’ views on school choice – creating a presumption that where a statement is in place a choice of school, can be declined only if the safety of other children is at risk as a result of the placement.

8.	The Local Offer includes information from schools about the specific circumstances in which a pupil with SEN would be refused admission. 

9.	The Local Offer contains information on the joint working arrangements of schools and statutory agencies and how they will deliver a co-ordinated local service.  


10.	Mediation is limited to a single challenge out of the four possible grounds currently available. Once mediation is brought on one ground, any further challenge is sent to the tribunal itself. 

11.	A time limit is placed on the mediation process to prevent the process being used to delay statementing decisions. 

12.	Mediation should be limited to a single meeting after which the full appeal should be initiated.

13.	All parts of the plan should be legally binding and that parents have the right to challenge the single plan through a single mediation process. 

14.	The two month window to initiate challenges should begin ONLY once a mediation process has ended without resolution. 


Question 10: 	What should be the key components of a locally published offer of available support for parents?

Sense agrees that the four classes of information listed in the green paper will be useful for parents of children with some special education need. However, we are concerned about the focus in the local offer on the ‘different provisions’ that individual schools must describe in relation to their SEN offer (s.2.20).  One of our concerns is that merely signposting the support available in individual schools risks directing parents of children with complex disabilities, such as deafblindness, towards special education settings if one offer on paper looks more supportive than that offered in other mainstream settings. Sense practitioners working with parents of deafblind children describe a number of criteria that the local offer should seek to include: 

“The information offer needs to provide the parents with confidence that the complex needs of their child are understood and will be met.  The information offer needs to be honest and open, using language that is sensitive and understandable. Parents need to assured that the range of multi disciplinary professionals necessary to meet these needs have been identified, particularly if the outcome of the single assessment is a single SEN category. Ideally the information offer should draw together all aspects of the child’s support system to ensure a co-ordinated and consistent programme to meet the needs of the child and parents”. 

A parent’s ability to choose a school should also be a meaningful one and determined only by the needs of the child – not the ability of a school to focus its teaching offer on specific groups. The issue for Sense is one of promoting meaningful choice.


Sense recommends:

•	Within each of the four classes of information: curriculum; teaching; assessment; and pastoral support schools describe very clearly the additional provision and support the school will provide in order to ensure that where a parent selects a school on a statement they will be supported to engage fully in the life of the school.     


Question 11: 	What information should schools be required to provide to parents on SEN?

Sense agrees with the Council for Disabled Children’s suggestion that the local offer should focus on the four areas described in s.2.22 of the Green Paper as a basic or minimum offer to parents of children with SEN.   

The four proposed classes of information listed in the green paper are sufficiently broad to include within them a wide range of support for different groups, including children with low incidence disabilities.  This means that where children have complex impairments the basic offer might be insufficient to make an informed choice about the best education setting for their child. We understand from our engagement with parents of deafblind children that there are specific types of information that would enable them to make a clear and informed choice of education setting suitable for their child’s needs.  Parents for example have regularly told us that one of the common barriers preventing children with multi-sensory impairment from engaging with learning is the lack of awareness amongst staff of the communication needs of deafblind children.  

Given this, Sense makes the following recommendations about the information that schools should provide in addition to their basic approach to SEN:  


Sense recommends information on:

•	Access for physical disabilities. 
•	Transport availability for within and out of county special school placements. 
•	Facilities and staffing for medical needs 
•	Commitment to communication support (Intervenors and communicator guides etc).
•	Formal partnerships with any specialist school in their local areas.
•	Ofsted rating of any SEN unit in addition to the overall school rating.
•	Experience of working with children with complex disabilities.
•	Availability of specialist teaching staff.
•	The communication specialisms amongst teaching and support staff.
•	Availability of Specialist equipment.
•	Access to health, therapy, psychology and nursing staff. 

The need for additional information to be made available to parents of deafblind children is supported by our recent survey of parents where 70% of respondents who felt that their child was not in a setting appropriate for their needs cited teachers’ lack of communication skills as the main concern. Parents also told us that they were concerned that, as a result of their child’s deafblindness, they lacked opportunities to participate in school life (30%) as well as having concerns over the availability of appropriate specialist equipment (60%).  

Question 12: 	What do you think an optional personal budget for families should cover?

Sense welcomes the fact that personal budgets for education services, whether offered in the form of direct payments or managed budgets, would be optional.  Sense does not believe that all education support will be suitable for personalisation, and that funding for communication services to low-incidence groups is likely to need to be retained by local authorities.  

Parents with a deafblind child require a particularly specialised service offer to enable their children to attend school and participate in learning alongside their peers. Services such as transport; communication support; assistive technology; and short breaks are all essential for children with multi-sensory impairment to get the best from mainstream or special education settings. Some of these services however will be more appropriate than others for inclusion in a personal budget. One concern that Sense has is that the low incidence of deafblindness and the fact that the main forms of providing communication - intervenors and communicator guides – who require high levels of skill and training make the development of a market in these unviable without continued local authority strategic oversight and support and ensuring appropriate levels of remuneration.

In general, personal budgets for education support services will need to make provision for the communication support that children with multi-sensory impairments require. Specialist communication support is essential for children with deafblindness - children with CHARGE syndrome for example can have a number of impairments that act as a barrier to learning to communicate from birth, for some who use speech, may still have speech difficulties that affect their ability to form sounds.   

In response to our survey on the extension of personalisation to education 48% of responses cited a communication worker as their primary use of a personal budget. Other responses included transport (24%); additional support in the classroom (68%); and specialist equipment (48%). 


Sense recommends

•	Any decision made on the extension of personal budgets to include education support services is assessed for the impact that this would have on low incidence impairments.  


Question 13: 	In what ways do you think the option of a personal budget for services identified in the proposed ‘Education, Health and Care Plan’ will support parents to get a package of support for their child that meets their needs?

Sense has concerns that, while extending personalisation to include education support services might bring benefits to some recipients – for instance, where funding is pooled from different direct payment sources to increase access to services – any benefits could be offset by more general negative consequences.  

Incorporating an education element into a single outcomes-led plan will only improve access to specialist support for low-incidence impairments if the processes used to determine funding are not subject to unfair ‘higher’ rate caps when fixing budgets.  

Sense has five primary concerns about the use of personal budgets to fund special education needs for children with a multi-sensory impairment:

•	Assessment - Sense is particularly concerned about the continued use of assessment questionnaires in adult social care and their possible use in the assessment of children’s needs – in particular the use of points systems that rate the ability of people with impairments to perform everyday tasks. Adopting this model of needs assessment for education services risks importing bad local practice into the assessment process. Sense also believes that the export of a points based system based on ability to undertake tasks into education needs assessments risks undermining the commitment to an outcomes-focussed process in the proposed single plan.  Sense welcomes the piloting of a range of options for assessing need in the children budget pilots currently being undertaken.  However, Sense believes that the use of assessment tools based on points might, for instance, lead to providers focusing on funding the care plan in isolation of the wider aspirations recorded in the single plan.  

?	The level of payment - A one-size-fits-all approach to the determination of need is not only inappropriate for the complex needs of deafblind children, but risks parents and cares receiving levels of payment that are unable to fund sufficient time with a communication specialist.

?	The market in deafblind services - reflecting the low-incidence of deafblindness, the market for education support services is very specialist, and because of the rarity of the condition in the population, offers little incentive to enter for communication professionals.  The relatively low incidence of multi-sensory impairment has a potential to create difficulties for parents in recruiting and retaining specialist communication workers, leaving parents and carers with limited options and having to settle for a lower quality service than what may currently be available. . 

?	Service development – Given the low-incidence of deafblindness in the population the cost of developing communication specialists through additional training and professional development are likely to be high, acting as a barrier to entry into this specialist market. Sense believes that local authorities therefore need to retain a responsibility for funding and the provision of low incidence specialist services.  

These concerns reflect findings from earlier research carried out by Sense in 2008 through our Deafblind Direct consultation into the experiences of people and families receiving the direct payment for social care.  In this consultation with 39 deafblind adults and parents of deafblind children who were either using direct payments (n=20), or had decided not to use this as a payment method (n=19): 

•	70% cited the lack of qualified or experiences staff as a barrier to the effectiveness of this personalisation model
•	45% cites the lack of support for using direct payment
•	25% cited financial limits on the level of direct payments.

The experience of personal budgets, whether direct payments or an alternative model, reflects the experience of one respondent to our 2008 consultation: 

“I was given only £6/hr to employ a carer for a deafblind child. When I said that wasn’t enough, the manager said to reduce the number of carer hours if I wanted to pay more”.  

Sense therefore makes the following recommendations in relation to personalisation: 

•	The responsibility for funding and developing specialist services for disabled children with very low incidence conditions is retained by local authorities. 

•	Children, young people, and families must have a choice as to whether they receive direct payments, or a service.

•	The system of allocating resources for direct payments, individual budgets, or personalised budgets must take into account of the costs of specialist communication support.

•	The markets for low incidence support services in a local area must be sufficiently developed before direct payments are offered to deafblind children and their families.


Question 14: 	Do you feel that the statutory guidance on inclusion and school choice, Inclusive Schooling, allows appropriately for parental preferences for either a mainstream or special school?

Sense is concerned that parents’ ability to exercise a meaningful choice of school for a child with multi-sensory impairments is weakened by a local authority’s power to override parental preferences in individual circumstances.  As an organisation working with parents and deafblind children (of whom our recent survey found over 90% had a statement) Sense believes that parents, and not local authorities, are often better placed to understand the learning needs of their children. 

Sense has concerns that the tests for including pupils in mainstream or special education settings: the efficient education of others and the reasonable steps that schools need to take, both introduce a number of barriers into the admissions process, including:

•	Parents’ views being marginalised in the admissions process – in particular through the proposal in the Education Bill 2011 to abolish the Admissions Fora through which parents can assess local admissions criteria. 

•	Undermining meaningful parental choice by making admission into special schools the default option for all children with complex needs despite the preferences of parents or deafblind children themselves. 
 
•	Weakening local accountability by undermining the key principle underpinning Inclusive Schooling – that “with the right training, strategies and support nearly all children with special education needs can be successfully included in mainstream settings”.  

Sense believes that the principles underpinning the guidance are weakened by the removal of the duty to cooperate between schools and other local agencies. Our concern is that, given the complex needs associated with especially low-incidence disabilities, schools will lack the incentive to work closely with health and social care agencies in order to make the reasonable steps required to include deafblind children in mainstream education settings.  

To strengthen parent’s choice over the education setting their child is taught in Sense recommends:  

•	The guidance Inclusive Schooling strengthens the role of parents’ views on school choice – creating a presumption that where a statement is in place a choice of school can be declined only if the safety of other children is at risk as a result of the placement.

•	The Local Offer includes information from schools about the specific circumstances in which a pupil with SEN would be refused admission. 

•	The Local Offer contains information on the joint working arrangements of schools and statutory agencies and how they will deliver a co-ordinated local service.  


Question 16:	Should mediation always be attempted before parents register an appeal to the First-tier Tribunal (SEN and Disability)?

While Sense cautiously welcomes the proposal to offer mediation as a separate stage in the process of challenging local authority decisions prior to appealing to the SEN tribunal, we do not believe that this should always be compulsory in every case.  

•	In some cases parents will already have challenged a local authority on one or more of the four grounds for challenging a decision (refusal to assess; refusal to issues a statement; concern over the content of the statement; appeal following an annual review). Where this is the case, on some models of mediation, it might be clearly inappropriate to continue with the process if it was the case that parents and local authorities cannot agree. Any continuation of mediation might introduce unnecessary delay, or be used by a local authority as a tactic to continue to delay statementing.  

•	In challenges involving residential school placements the use of mediation in every case might be inappropriate given the complexity of the issues, the range of agencies involved, and the amount of evidence required to support a case.  Mediation might, for example, not be the most effective means of challenging a decision if the evidence to support a residential placement request by parents is not available prior to meeting the local authority.  Mediation as a compulsory stage might raise practical difficulties for parents. How, for example, would parents get all agencies involved prior to an appeal (and in some cases before they have been asked to give an opinion)?  Mediation might only be effective in the most complex cases if health and social care were involved at the mediation stage too. However, it is Sense’s experience that they will not always to agree to attend. 

•	Mediation, as a meeting during the course of the two-month appeal window may be useful to find out what evidence LA will want to see. However, the government needs to consider how effective this would be when there is a trend for some local authorities to instruct counsel for every residential school appeal.  Any mediation process would need to be clear beforehand on whether Counsel would be allowed to attend, as well as how much input they would have given that introducing legal representation would be extremely intimidating for parents.


Sense recommends: 

•	A time limit is placed on the mediation process to prevent this process from becoming unduly lengthy and restricting parent’s ability to bring the case to Tribunal. 


Question 17: 	Do you like the idea of mediation across education, health and social care? How might it work best?

Sense believes that the proposal to introduce a separate mediation stage will only work if local authorities constructively seek to reach agreement about assessment and statementing and actively seek to avoid an appeal to the SEN tribunal. Parents of deafblind children who have experienced the tribunal have reported that local authorities can be less than open to reaching consensus. One parent responding to a recent Sense survey told us the process for them was: 

“Nerve wracking, too much paperwork duplication, extremely time consuming and too long.  From requesting reassessment to getting to Tribunal took 18 months for us.  We felt like the reports we had obtained from professionals were completely ignored by the Tribunal Panel, and they did not agree with any of our criticisms of the school, as the school just denied that they had happened.  It felt like we were being called liars, and the way that the LA Statementing Officer talked to us in the meeting was very disrespectful - at one point she actually shouted and none of the Tribunal Panel passed any comment.  As we had never been to Tribunal before we felt immediately on the back foot as we did not know what to expect.  We will be appealing again at next annual review and feel that we will be much better prepared next time.”

While Sense believes that the opportunity for parties to come together offers a useful way of diffusing disputes about local authority decisions, Sense has a number of concerns about the effectiveness of this as a forum for resolving disputes for parents of deafblind children: 

•	The Green Paper is not clear on whether a single plan will be supported by a single process of challenging the agencies involved in determining the package of support. 

•	Under the current statement only sections 2, 3 and 4 are legally binding, local authorities having no statutory duty to meet the non-education needs of the child specified in sections 5 and 6. 

•	Given the potential for multiple challenges as parents dispute the refusal to assess through to challenge at annual review, Sense recommends that mediation should be limited to a single meeting after which the full appeal should be initiated. This single meeting should be an opportunity for parents to explore the additional information that local authorities might need to undertake an assessment and ensure that the needs of the child are met. 

•	There is currently a two-month window in which parents can initiate a challenge against a local authority to a tribunal. Given the need for parents of deafblind children to obtain independent assessments (on the basis that local authorities often fail to understand the needs of deafblind children). 


Sense recommends: 

•	Mediation should be limited to a single meeting after which the full appeal should be initiated.

•	All parts of the plan should be legally binding and that parents have the right to challenge the single plan through a single mediation process. 

•	The two month window should begin ONLY once a mediation process has ended without resolution. 




3. Learning and Achieving

In this section Sense answers questions: 18; 19; 21; 25; and 32. 


Section 3 - Summary of recommendations

1.	The development of specialist local networks across a local authority to spread best practice in working with low-incidence impairments such as deafblindness. 

2.	The development of school outreach and MSI consultancy services to allow schools to access specialist support.

3.	Schools in a local area use toolkits and teaching aids such as the Curriculum for Multi-Sensory Impaired Children to disseminate their best practice.   

4.	Greater emphasis on multi-sensory loss and low-incidence impairments in initial teacher training (ITT), including more structured placements in special schools for all trainee teachers. 

5.	Teachers are provided better incentives to develop specialist MSI classroom skills to support deafblind children’s learning, including support to encourage teachers to undertake the mandatory qualifications in teaching children with MSI/ deafblindness.

6.	Teachers are taught to recognise the difficulties that some children with low-incidence impairments, such as deafblindness, have in communicating and how this can lead to frustration and challenging behaviour.  

7.	Parents are provided with more frequent and structured progress reports about a child with SEN. 

8.	Schools provide more regular updates to parents of children with Special Education Needs.

9.	Regular reports on progress made against personal learning goals. 

Question 18: 	How can we ensure that the expertise of special schools, and mainstream schools with excellent SEN practice, is harnessed and spread through Teaching Schools partnerships?

Sense’s core work with children involves supporting schools across local authority areas to enable teachers to engage with deafblind children in the classroom. As a result of our experience we understand that there are a number of ways in which Teaching Schools can build information and training partnerships across local areas. 

However, while there is some good practice available for schools to access – such as Sense’s document Quality Standards in Education Support Services, - a far more significant barrier across all education settings is the lack of expertise and understanding around low-incidence impairments such as deafblindess.  Any sharing of best-practice needs to have a well-developed knowledge base from which to draw on.  However, it is Sense’s experience that knowledge of deafblindness and the difficulties that it creates for communication, is lacking in many local areas. unless creative service solutions are in place it is often difficult to source highly skilled roles – such as an intervenor or a communicator guide –because of the low incidence of deafblindness as a disability and the need for a critical mass to establish service viability. 

In this context Sense has developed a service that delivers specialist MSI services in schools to deafblind children whose multi-sensory impairment can create barriers to communication with teachers and other pupils. 


Case Study – Sense’s Work in Tower Hamlets

Sense’s work in collaboration with local authorities shows the importance of peripatetic services acting as a bridge between schools to enable the wider development of specialist skills. Sense’s work with Tower Hamlets over the previous ten years is an example of how specialist service providers can bring specialist MSI skills to a number of special and mainstream schools in the local area.  Sense currently provides 12 days a year to Tower Hamlets. The organisation, in liaison with local professionals, decides how to assign to individual schools. 

The work Sense carries out with schools in Tower Hamlets is crucial in raising the awareness of the local teaching workforce and developing the skills required to work with deafblind children. This includes Sense delivering expertise in: 

•	Primary special school: Through Sense’s involvement in this setting awareness about multiple-sensory impairments (MSI) and the needs of deafblind children has been embedded in the school.  This has resulted in the school training and supporting five teachers to undertake the mandatory qualification in MSI.  Sense continues to work alongside teachers and children with more complex needs where further professional opinion is required. Expertise is further developed through the mentoring role that Sense has with MSI teachers. 

•	Mainstream primary/secondary schools: The peripatetic role undertaken by Sense shows the importance of working across special and mainstream schools where specialist skills are involved.  Tower Hamlets for example refer particular young people to Sense so that a tailored package of support can be developed according to the young person’s needs and concerns raised by staff in relation to that young person.

In all cases Sense works very closely with the local specialist sensory impairment team and also teachers within the schools we visit. Importantly, our involvement with the Local Authority has allowed the organisation to maintain links with many local professionals and champion the needs of deafblind children and young people through effective partnership working with the local authority.  


Through our experience of working across different education settings and local authorities we recommend a number of processes to capture and spread best practice:

•	The development of local specialist networks – Sense practitioners have told us that pooling resources across agencies (health, education and social care) and local authorities for advice, assessment and provision enhances availability and quality of provision in local areas. Comments from practitioners include: 

“Improved partnerships and joint work between special schools and colleges and their counterparts in mainstream education.  At present [Sense College has] good examples of practice sharing and disseminating information between specialist and FE colleges and similar examples between special and other schools.  Locally or nationally there is no process to share between the sectors.  Professional networks to share these resources and experiences would further support inter sector sharing”.

A practitioner working in the MSI field told us of the value of specialist support networks for professionals working with deafblind children: 

“The MSI world is a very small one; the children are few and far between and professionals in it can so easily be isolated working as they do without colleagues around them who understand the specific needs of the deafblind children they support. Having a regular session where we can meet with people who really do totally understand and who can provide ongoing training, CPD and empathy is invaluable and something I always prioritise highly even within my very full diary”.

•	This can be effectively achieved when local authorities take a strong strategic lead in bringing organisations and education settings together.  One area where this has occurred with demonstrable improvements is in Suffolk County Council.  In Suffolk there is a joint integrated service that functions well across the area and maximised the availability of help to such vulnerable children. Services for children with sensory impairments is tri-partite funded by social care, education and the PCT; there is a fully integrated sensory and communication children’s and young people team. Specialist support services for children with sensory impairments provide intervenors (specialist one-to-one support for multi-sensory impaired children) in school, in the home if a child is unable to attend school, in a hospice, pre-school placements and family placements. 

The service also offers specialist support to parents, including at assessment, to ensure resources and services are used most effectively as well as providing specialist training for school staff.`

•	The development of school outreach and consultancy services – Some Sense specialists have told us that the skills required to support teachers communicate with deafblind children can be shared by one school having an agreement to loan out their expertise.  Where local authorities have co-ordinated this, for example, through Sense’s work with Local Authorities such as Tower Hamlets, individual schools have benefited from the ability to develop a better understanding of low-incidence impairments and the skills to support deafblind children and young people.  

•	Best-practice toolkits and teaching aids – Sense has experience of developing toolkits and teaching aids that specialist and mainstream schools can use to develop their abilities to work effectively and supportively with children with multi-sensory impairments.  The document A Curriculum for Multi-Sensory Impaired Children for example shows, though a number of case studies and teaching aids how teachers in special schools can work with profoundly deafblind children to develop their understanding of the external world around them.  
 

Sense Recommends:

•	The development of local specialist networks for MSI practitioners, including professional networks for MSI teachers, intervenors, communicator guides and deafblind workers.

•	The development of School outreach and consultancy services.

Question 19: 	How can we ensure that we improve SEN expertise, build capacity and share knowledge between independent specialist colleges, special schools and colleges?

Sense believes that one way in which expertise can be developed and shared across the three settings identified in question 19 is by schools having a commitment to develop particular specialisms within their workforce.  In the context of schools working effectively with deafblind children this means developing and sharing communication specialists and trained assessors. Sense has concerns about the current availability to schools of the communication specialisms required to ensure that deafblind children can engage in learning, and would encourage all education settings to develop this element of SEN teaching.  

Sense works closely with parents of deafblind children.  Parents regularly tell us that one of their main concerns about the education setting their child is placed in is the lack of understanding of deafblindness amongst teaching staff. In a recent survey of parents of deafblind children 70% of responses in relation to the suitability of their child’s education setting cited a teacher’s lack of communication skills as a significant issue.  Parent views such as the following are not uncommon in the view of Sense: 

“… there is a general lack of understanding throughout the education system of the impact being deafblind has on a childs ability learn.  We are lucky in that our daughter’s Cochlear implant has been very successful and she appears to understand much of what is said to her and is becoming a proficient IT Switch user.  But she is stuck at a school which is not the most appropriate for her, without one-to-one support, because of a cost issue - we do not feel that she is going to reach her full potential at the school because of their lack of experience with deafblind children and they do not agree that in the long term switch use is going to be [child’s] best means of communication.  We will continue to appeal annually to try to get a change of school, but the toll it takes on us as parents and our other daughter is huge but we feel that we have no alternative.”

Given the importance of communication skills for all teachers Sense believes that the ability to use different forms of communication is essential, and that this is a crucial element of any strategy to increase the capacity of the teaching workforce to meet the needs of all children with SEN. Recent developments in the evidence base for developing tactile communication techniques and approaches have demonstrated the value of the knowledge base within the deafblind field. The work of Deafblind International’s Communication Network has been fundamental to share the practice of co-creating communication using the tactile modality.  Barbara Miles’ work describing the approach of ‘exploring, talking and listening hands’ ensuring that hands are seen as the primary modality for communication and exploration.   

In addition to the continued role of specialist MSI teachers with the ability to work intensively with deafblind children, Sense recommends that: 


•	Communication skills become a central part of the PGCE structure.

•	Trainee teachers spend a mandatory week on placement in a special school, or special SEN unit in a mainstream school. 

•	Trainee teachers are taught about the different disabilities that they might encounter – and the role of third sector agencies in working collaboratively to support children with complex SEN. 


  Question 21: 	What is the best way to identify and develop the potential of teachers and staff to best support disabled children or children with a wide range of SEN?

Sense agrees with the focus on workforce development as part of a broader package of measures to improve outcomes for children with SEN.  SEN however covers a wide range of learning and physical barriers to accessing education services. The support needs children have, and the skills that teachers need to develop to meet them, vary widely according to the particular impairments a child has. Deafblindness, because of the implications that multi-sensory loss has for learners in understanding their environment, presents specific challenges to both teachers and children.  Sense believes that the barriers that deafblindness presents to children can only be overcome if teachers have both a good understanding of the nature of multi-sensory loss, and have an incentive to develop the MSI specialisms that deafblind children need to fully engage with learning. 

While Sense believes that schools should have access to mandatory qualified MSI teachers with specialist skills, we also recommend that all teachers possess some basic skills and understanding of the challenges of working with children with multi-sensory impairments as part of their Initial Teacher Training (ITT).  Deafblindness can refer to any level of multi-sensory impairment, from total sight and hearing loss to moderate impairments in each sense. The combination of even moderate hearing and visual impairments has implications for learning since the dual impairment prevents children compensate for one impaired sense by relying more on the other. This is what led the Department of Health to recognise deafblindness as a unique disability in Think Dual Sensory, (Department of Health, 1995). Exposing teachers at the beginning of their career to the challenges of working with low-incidence impairments will allow them to make meaningful choices about where they eventually specialise as well as increasing their awareness of a condition that can have profound implication for learners if unaddressed.  


Sense recommends:

•	All teachers possess some basic skills and understanding of the challenges of working with children with multi-sensory impairments as part of their Initial Teacher Training (ITT).  


Sense also recommends that teachers should be provided incentives to develop specialist classroom skills to support deafblind children’s learning.  Sense understands from engagement with teachers that there is little professional incentive to undertake training in some areas – citing the lack of financial backing and study time to commit to the course.  Developing a school’s specialist capacity to work with children across all levels of multi-sensory impairments is one of the most effective ways to prevent the frustrations that children can experience due to the inability to communicate in the classroom. 


Sense recommends:

•	Education settings provide adequate time and funding to encourage teachers to develop specialist skills as part of their ongoing commitment to professional development.


Specialist teaching and communication skills can be developed through the Continuing Professional Development (CPD) regime and through courses such as the University of Birmingham’s programme of multi-sensory impairment and Deafblindness courses. There are two national programmes available for teachers to take a General Teaching Council recognised Mandatory Qualification in Deafblindness/MSI. This includes the University of Birmingham and Whitefield Schools and Centre in partnership with Kingston University. 

According to the University of Birmingham the course is “focused specifically on the needs of deafblind people, it enables professionals to gain new knowledge, skills, and understanding.  It is enriched and informed by research into deafblindness and MSI at the University and elsewhere.”  

Question 25: 	Is the BESD label overused in terms of describing behaviour problems rather than leading to an assessment of underlying difficulties?

Sense believes that the BESD label is too often applied to children with a multi- sensory impairment and that the lack of awareness about deafblindness in the teaching workforce is one reason for the misapplication of the BESD category. Through our work supporting teachers and classroom assistants we understand the value of basic training and the ongoing development of skills through the CPD training regime.  Sense believes that training is an effective way of increasing the teaching workforce’s awareness of the issues affecting deafblind children who experience an impairment in both the hearing and visual senses. This was highlighted in a recent 2010 report by Ofsted: The Special Educational Needs and Disability Review, which stated that:

“… the support [children with SEN] were allocated was not always appropriate to their needs. For example, some were allocated support for their behaviour when, in fact, they had specific communication needs”. (p11)

Deafblind children with dual sensory impairments can have difficulties in engaging with learning because the world may be more confusing to them or because they may be functioning at an earlier developmental age than their age in actual years. However, with the right support from teachers and other support workers – for instance intervenors or communicator guides – the isolation that deafblind children can experience can be managed in a way that allows a more active engagement with learning.  The relationship with an intervenor or communicator guide allows the development of trust which in turn allows for the child/ young person to feel secure and able to engage in the wider world and learning. 


Sense recommends:

•	Prior to initiating an exclusion process where challenging behaviour is a concern schools must seek independent specialist advice where parents request this and a statement is in place. 


Sense’s recent survey of practitioners supports the claim that BESD is often misapplied in cases where an underlying sensory impairment has been unrecognised or unaddressed.  Some Sense practitioners report for example that the mere fact of labelling a deafblind child as having challenging behaviour often guarantees that it is the challenging behaviour rather than the communication needs of the child that are addressed.  Sense believes that as a result many deafblind children are simply judged as problem pupils requiring strong classroom management rather than support.  A Sense practitioner with classroom experience of working with deafblind children confirms this, reported for example, that: 

“There are sadly too many cases where Deafblind children and young people have been misunderstood, mislabelled, seen as emotionally and behaviourally challenging when in fact their needs as individuals have not been recognised, understood and met”.

Sense practitioners working with children’s challenging behaviour have told us that while mis-categorisation is common, it is also, in cases involving deafblind children, avoidable with the right training.  One of Sense’s practitioners working in the BESD field reports that: 

“the causes of BESD are multiple and usually not surprising – they normally represent an individual reacting in an understandable way to internal or external causes of anxiety or distress. It is vital that BESD is not used as a label or in a pejorative sense”.

Sense acknowledges that The BESD category is as relevant to children with a multi-sensory impairment as it is to children generally.  However, our experience of supporting schools to work with deafblind children suggests that a lack of awareness about deafblindness is itself a contributing factor in deafblind children’s challenging behaviour.  When this happens it is unsurprising that children with a multi-sensory impairment become frustrated and that this manifests itself in challenging behaviour and relationship problems.
 

Sense recommends: 

•	Better access to training for teachers and classroom assistants to recognise the frustrations that children with a dual sensory impairment can have when unable to communication. 


Question 32: 	What information would help parents, governors and others, including Ofsted, assess how effectively schools support disabled children and children with SEN?

Sense supports parents of deafblind children attending primary and secondary school in a number of ways, including working with teaching staff to undertake specialist assessments, working directly with deafblind children in a school setting, and supporting parents in the tribunal system. We understand the importance to parents of good quality information about how schools support deafblind children, and where the current system often fails to do this. The conditions causing a multi-sensory impairment can be linked to degenerative conditions that mean visual and hearing impairments worsen over time. This will have an effect on the ability of a deafblind child to engage with learning and will require support to be tailored to meet evolving their needs. Parents and teachers will need ongoing information about the progress a child with a multi-sensory impairment in order to make an informed judgement about the suitability of the support being offered and the appropriateness of the educational setting. Surveys of Sense case studies show that in over half (57%) of the instances where Sense was asked for information by parents, education was the main issue of concern.  

Parents, in a recent survey, have also told us that they often lack information on the progress that their child is making in school. This was a common response from parents we surveyed, for example:  

“I'd like more information about my child's ability to independently access assistive technology and what is available.  I'd like more information about levels of mobility travel and skills off campus and in preparation for the future”

One parent complained that it was only legal action that improved communication: 

“Until we went to the Tribunal we had never received a copy of any targets set for our daughter (she had been at the school 3 years), and we are now in negotiation with the school to set more appropriate targets.  We felt they were very basic and things that she already did. Think that getting copies of targets and outcomes each term is essential”.

Common complaints included a lack of progress reports and the need for teachers to provide more face-to-face contact. Parents here wanted: 

“Clear and defined targets with specific time bound achievements”

“Frequent progress reports and informal meetings with teaching staff.”

And,

“More simplified, plain English scales, having a separate set of targets. i.e. a set of targets for a child in mainstream; a set of targets for a deaf child; a set of targets for MSI etc so not constantly worrying your child is underachieving when in fact compared to someone in the same position they are doing ok” 


Sense recommends: 

•	Schools provide more regular updates to parents of children with Special Education Needs

•	Regular reports on progress made against personal learning goals appropriate to children with multi-sensory impairments. 


4. Preparing for Adulthood

Sense answers questions 33; 34; 35; 36; 37 38; and 39


Section 4 - Summary of recommendations

1.	A single point of contact should be appointed to act as a link between the education setting a deafblind person currently attends and the intended FE or training institution.

2.	In transitioning to adult health services priority should be given to the amount of additional time that deafblind young people require to manage a major change in their life.   

3.	Deafblind young people should be identified by adult health care teams before they reach their 14th birthday in order to determine the level of need and types of services they are likely to require once they reach 18.    

4.	An additional social and emotional well-being category should be included in the areas that the Department of Education’s work supporting disabled young people and young people with SEN should cover.

5.	Government should issue guidelines on working with deafblind people to enable employment agencies supporting young people into work, such as Connexions and JobCentre Plus, to work constructively with deafblind jobseekers.

6.	Access to Work should make a clear offer of support prior to the offer of employment so that deafblind people can inform potential employers of the availability of the support required to complete their duties. 


Question 33: 	What more can education and training providers do to ensure that disabled young people and young people with SEN are able to participate in education or training post-16?

Sense works with deafblind children and young people at all ages, including those approaching age 16 who are considering their next steps after compulsory school age. Sense has experience of supporting education providers to ensure that young people with a dual sensory impairment can engage with learning as well as contribute to the wider activities of a school. 

Sense believes that education and training providers need to be aware that simply having a dual sensory impairment does not prevent deafblind people from participating in learning.  The term deafblind describes degrees of combined sensory loss - from the most profound impairment where young people receive very little hearing and visual input, to a more moderate degree of sensory loss.  What education professionals and training providers need to be aware of is the combined impact that a multi sensory impairment can have. This means that however small a loss in one sense (e.g. hearing), if this occurs in combination with a visual impairment, its impact will be far greater than if it occurred alone. Multi-sensory impairment can have implications for balance and this is particularly common in identified syndromes such as CHARGE or Usher syndrome.  In addition, underlying conditions, such as CHARGE, CMV etc can be associated with breathing and feeding difficulties. 

Some deafblind people will have levels of impairment that will prevent them from undertaking any kind of employment, and for whom it would be unhelpful to target employment related services.  Sense however strongly believes that continuing support to help profoundly deafblind people communicate is essential to enable them to engage with the daily activities through which they continue to learn about the world around them.  The importance of ongoing education for profoundly impaired deafblind people is supported by the experiences of Sense practitioners who have told us that:   

“where work is not a feasible outcome, a multi-agency assessment process should be undertaken, with experienced and qualified MSI advisor as part of the assessment team, to determine requirements for continuing education provision, support for ongoing communication, independence and mobility, and access to leisure”.  

Despite the challenges of supporting young people with multi sensory impairment in education and training both parents and Sense practitioners believe that there are no insurmountable barriers preventing this.  Sense practitioners for example make it clear that there are some basic steps that education and training providers, as well as local authorities, can take to narrow the gaps between schools and further education.  

Key to the success of a move into further education or training include: 

•	Continuity of people throughout the transition – a single point of contact should be appointed to act as a link between the education setting a deafblind person currently attends and the intended FE or training institution.  This person should be responsible for liaising between the settings and ensuring that the support needs of the young person are known. Continuity of one-to-one support at times of change remains important to deafblind young people. Whilst not wishing to create a culture of dependency, recognition of the importance of stable trusting relationships at time of change, needs to be considered and planned for.  support relationships need to be phased and planned throughout the period. 

•	Providing adequate time to plan and support the move into FE and training – effective and well-supported transitions to FE or training placements (whether special colleges or mainstream FE colleges) needs to be planned in advance with the wishes and aspirations of the young person at the centre of the process. 

•	Work coaches with adequate understanding of deafblindness – professionals working with deafblind young people need to be aware of the challenges they face in accessing education and training, including the additional difficulties that multi sensory impairment can have for interacting with others and communicating. 

•	Availability of specialist colleges and education settings – some young people with a multi sensory impairment will feel that a special education setting is the appropriate one for their level of need. Where this is the preference of a deafblind young person information on availability of local special colleges and the support available through them needs to be made clear to the young person as a part of their transition plan. 

This is supported by the experiences of Sense practitioners working in specialist education settings designed to support deafblind young people and adults into post-compulsory education. In particular Sense was told that supporting young people with multi sensory impairment should include: 

“Good multi disciplinary partnerships between special schools, specialist colleges and general further education colleges with opportunities to access a range of services such as lifelong learning and employability programmes.  The transition process needs to be well planned and allow sufficient time for a smooth transition, often over a number of years. The views of the learner need to be captured along with those of parents and other key professionals to ensure a person centred approach. Success on any future individual’s development will rely on a coherent and well developed information and advisory service for parents and carers and high levels of specialist staff support”.

Question 34: 	When disabled young people and young people with SEN choose to move directly from school or college into the world of work, how can we make sure this is well planned and who is best placed to support them?

Young people with a multi sensory impairment need support to plan their route into employment or further training as well as support in the workplace through services such as Access to Work.  Sense believes that where young deafblind people want to move into the workplace the support should be available for them to so this. This means that for young deafblind people to get the support they need those advising them (such as Connexions) need to be aware of the challenges that multi sensory impairment can present. It is our experience however that many of the agencies that young people will come into contact with as they leave education make a number of assumptions about deafblindness - presenting challenges to entering the workplace. 

It is important for young deafblind people who want to enter the workplace that they receive support from an employment advisor who is aware of deafblindness – and that MSI specialists are involved in the process of planning for work. It is also important for the deafblind person in seeking employment that they are made aware of the information and support that is available to them once they are in employment.  Information such as professional support networks, the Access to Work scheme, and the support available from unions are all relevant to the success of deafblind people finding and sustaining employment. 

Sense is concerned that the current system for supporting deafblind people into the workplace can create disincentives for employers in making offers to deafblind young people.  A primary concern is the conditional nature of Access to Work support.  Under the current process for accessing the scheme young deafblind jobseekers can only apply to Access to Work once they have a firm job offer.  This can be problematic however if there are significant delays in obtaining the support once an offer has been made. Sense is disappointed that the Governments solution to the problem has been to produce a letter that deafblind job seekers can present to employers to show that support is available for once in the workplace.  Sense is concerned that the commitment to workplace support is subject to a post-offer assessment and, in complex cases, can cause the employer significant delays in filling a post. 


Sense recommends: 

•	Access to Work makes a clear offer of support prior to the offer of employment so that deafblind people can inform potential employers of the availability of the support required to complete their duties. 


In our recent response to the DWP call for evidence on Specialist Disability Employment Programmes Sense raised the issue of agencies responsible for arranging work placements making blanket assumptions that people with a multi- sensory impairment can’t have legitimate career aspirations because of their sensory impairment. We highlighted a number of common attitudes and among staff working with jobseekers (such as Access to Work staff) about the ability of deafblind people to enter the workplace and the support that they need to do their job. Sense for example pointed out that there is often a presumption that deafblind people cannot work – even though they may have qualifications – or should simply take whatever work is available despite having a background in a particular sector. This resulted in one case where a highly qualified deafblind person was only considered suitable for low-skilled manual work. 


Sense recommends:

•	The Government issues guidelines on working with deafblind people to enable employment agencies supporting young people into work, such as Connexions and JobCentre Plus, to work constructively with deafblind jobseekers – including recognising a deafblind person and make a referral to a specialist disability employment service, such as a Disability Employment Adviser.


Sense feels that this is consistent with the recognition of deafblindness as a unique disability in the Department of Health document Think Dual Sensory (Department of Health, 1995), and will help to avoid some basic misunderstandings that might prevent entry into the workplace. Some of the problems encountered by deafblind people in engaging with the Access to Work scheme are simply due to a lack of understanding and guidance on how to work with deafblind people (see case study below). 


A.R’s Story

A.R. is totally blind and has a severe hearing loss.  She cannot read print, cannot use a standard telephone, cannot communicate with strangers, cannot hear public announcements and cannot hear traffic.  Her Access to Work assessor could not understand why she had greater difficulty with travelling, and therefore needed more support, than a hearing-blind person would.  The assessor understood the needs of blind people and wrongly assumed that the needs of a deafblind person were the same.  The assessor also recommended that she had additional support worker hours for using the telephone, instead of recommending the use of braille textphone software, which would have been cheaper and met needs better.  The assessor was unaware that braille textphone software exists, i.e. the assessor was not familiar with the equipment that is available for deafblind people.  Had the assessor had specialist knowledge of deafblindness both of these problems would have been avoided.  These problems were initially reported to us over three years ago


Sense also feels that it is important to give both parents and deafblind young people a voice in planning the move out of education and into independence. In a recent survey that Sense carried out with parents of deafblind children and young people many were keen to ensure that potential employers understood the nature of deafblindness and saw the value of bringing deafblind people into the workplace. 

Employers, in the opinion of many parents could take a number of steps to ensure that deafblind young people were given fair access to support within the workplace. Parents for example were often concerned about the ability of potential employers to be deterred by the lack of general knowledge about a particularly low incidence condition.  One parent’s solution to this was to encourage employers to:   

“Attend awareness training/ send staff on awareness training or invite someone in. Offer a mentoring system.”

While others stated that employers should: 

“See the person not the disability. Prepare themselves and the workplace to ensure a smooth and welcome introduction.”

“be more aware of the condition so that they are not scared or put off by an impairment”

Some parents felt that employers could make a number of steps to encourage deafblind young people to apply to them.  To encourage this employers could for example: 

“Advertise that they employ and support staff well with a multi-sensory impairment”

“Visit schools on careers evenings to advertise their company and how to access them”

“Be educated themselves so that there is less discrimination”

Sense hopes that the introduction of the Single Assessment process and the Single Plan with its emphasis on the goals the young person wants to achieve will enable more young deafblind people to progress into education.  We hope that this helps to avoid deafblind learners from being ‘written off’ due to their impairment.  At present, as Sense practitioners tell us below, this is a real risk for deafblind young people: 

“At present some learners with PLMD and MSI are steered away from further education at the age of 19 if their Continuing Health Care Assessment places them at level 4.  It is argued that their needs are primarily for a care service rather than an education service.  Combining the assessments could improve this situation, and encourage the view that it is not either or, but rather combinations of and a holistic programme covering all needs that is required”. 

Question 35: 	Do you agree that supported internships would provide young people for whom an apprenticeship may not be a realistic aim with meaningful work opportunities? How might they work best?

Sense believes that employers should open up their recruitment processes in order to support young people with dual sensory impairments into the workplace. One way of achieving this is to provide informal ways for young people with disabilities to gain employability skills. 

While many young people with a dual sensory loss will leave compulsory education with qualifications below the level 2 eligibility threshold for entering a formal apprenticeship this should not be taken as an indication of general ability. 

In the experience of Sense practitioners who work daily with young people with a dual sensory impairment the assessment of a particular need, for example the development of basic employment skills should not be age related.  A dual sensory loss, and the communication impairments this can cause, often results in a delay in developing the ability to engage with education.  Crucially however, a developmental delay does not indicate any underlying cognitive impairment or learning disability. Some young people may therefore function at a lower age but still be able to acquire skills for the workplace given the right support. 

Question 36: 	How can employers be encouraged to offer constructive work experience and job opportunities to disabled young people and young people with SEN?

Parents of young people with a dual sensory impairment have told us that, of the different types of information that employers could provide, information about accessible work placements is the most useful to them. As discussed above, parents feel that employers need to make more of an effort to develop links with the education settings that deafblind young people attend. A common barrier that parents felt was preventing young people from undertaking any placements in the workplace, including work experience, was the lack of understanding about deafblindness. Sense believes that some of the misunderstandings that terms such as ‘deafblindness’ can create, for example the impression of a profound or total loss of sight and hearing, raise unnecessary barriers to deafblind people entering the workplace. 

Question 37: 	How do you think joint working across children’s and adult health services for young people aged 16 to 25 could be improved?

Effective transition into adult health services for deafblind young people who need ongoing support from health agencies after age 18 is dependent on early planning and identification of future need. Sense believes that for the move from children’s to adult heath services to be a successful one requires the early involvement of all agencies involved with the young person, including the adult services that will be responsible for providing future support. The experience of deafblind young people who have recently made the move into adult services is that the level of provision and recognition of need can be dependent on the local area. Sense practitioners supporting young people through the move comment that the level of services: 

“…varies from county to county.  In our experience they are fairly effective for children but become fragmented when the child passes onto adult services.  Then the experience can vary. Some individuals manage to get effective joint funding where health, education and adult social care services work closely together to meet needs. For some, one service will assume responsibility with the result that the other services fade into the background”.

As a minimum guide for how the transition process should be managed we would urge the Government to support the continued use of the National Service Framework for Children, Young People, and Maternity Services, in particular Standard 4: All young people have access to age-appropriate services which are responsive to their specific needs as they grow into adulthood. In particular Sense agrees with the NSF, that transition to adult services should be: 

“… planned and co-ordinated around the needs of each young person to maximise health outcomes, their life chance opportunities and their ability to live independently – this is particularly important for disabled young people or those with long-term or complex conditions.” 

In order to meet the requirements of the national service framework in respect of deafblind young people Sense recommends that recognition is given to the amount of additional time that deafblind young people require to manage a major change in their life. As one practitioner working with deafblind young people describes: 

“Changes need to be gradual… Time scale is important, families and the young person need time to adjust. Adulthood can be a difficult concept for many families”

Deafblind young people can have a reliance on routine as a way of controlling and understanding their world. The use of routine can be especially crucial for profoundly deafblind young people, allowing professionals working with them to manage the gradual introduction of new experiences and activities through which they can learn about the world around them. 

Young people with a dual-sensory impairment can often have additional ongoing health needs that adult services must identify prior to the move into their services. It is not uncommon for deafblind young people to have a gastrostomy tube (use of a feeding tube), sleep problems, breathing difficulties (apnea), and associated pulmonary and chest infections as a result of their particular condition. Sense regularly works with deafblind children with other disabilities – such as cerebral palsy – meaning that future needs for health services are expected to continue into adulthood.  Some conditions such as Usher Syndrome, because of the gradual deterioration of sight as a young person enters adulthood, also mean that the need for support increases as a young person moves nearer to adulthood. The involvement of adult services in the planning phase prior to transition is crucial here if a future need can be predicted and consequently planned for in advance. 

As part of Sense’s internal consultation with parents and service users we asked what support for an effective transition parents felt would be necessary.  Of those who responded to the question 36% cited early assessment of adult social care requirements, with three of these citing information about residential care, and others making providing comments about other services and support: 

“Assessments by suitably qualified professionals and due regard given to [the] deafblind guidance; something badly lacking in our family's experience. Joint working between learning disability team and sensory impairment; when a young person is with the LD team the sensory team expertise isn't sought which leads to lack of understanding of LD and deafblind needs.”

“Comprehensive information on available and suitable provisions.”

“Early contact with adult care services with a named worker for my child who can guide us through the transition process”


Sense recommends: 

•	Deafblind young people should be identified by adult health care teams before they reach their 14th birthday in order to determine the level of need and types of services they are likely to require once they reach 18.    


Question 38: 	As the family doctor, how could the GP play a greater role in managing a smooth transition for a disabled young person from children’s to adult health services?

Sense has concerns that the level of awareness about dual sensory impairment is sufficient among GPs to enable them to support deafblind children into adulthood. Sense practitioners tell us for example that many deafblind children receive their care from specialists and paediatricians, often in the setting of children’s hospitals.   Sense believes that the general lack of awareness about deafblindness is likely to impact on the ability of GPs and other specialists as they move into Clinical Care Consortia as a result of the ongoing reforms to the health system. 

Question 39: 	Do you agree that our work supporting disabled young people and young people with SEN to prepare for adulthood should focus on these areas: 

•	ensuring a broad range of learning opportunities; 
•	moving into employment; 
•	independent living; 
•	and transition to adult health services? 

What else should we consider?

Sense broadly agrees with the focus on the four areas listed in the question. The four areas listed as priorities are cited by parents responding to internal Sense consultations as those where they feel current levels of service are inadequate or lacking entirely. If these areas are to form the focus of a general transitions offer however, Sense feels that there are additional elements that must be included within a separate category. 

Sense for example believes that if deafblind young people are to successfully move into adulthood they should have the communication support and opportunities to develop meaningful relationships central to their emotional, mental health, and behavioural wellbeing. Parents views support the introduction of a further category that includes the ability to develop personal relationships. Parents for example have told us that for younger deafblind children it is the lack of opportunities to engage with other pupils in the life of the school that makes the particular setting inappropriate for their needs. Obtaining support to overcome the isolation associated with sensory impairment can be a priority for parents. In one recent survey for example only half of parents responding to a transitions question had received some form of guidance on the availability of local services as part of a transitions package.  The types of information that parents felt would benefit their child’s ability to move into the adult world included information on transport availability; communication support; and accessible FE facilities – all services that can enable young deafblind people to access a wider range of social and other opportunities. 


Sense recommends 

•	An additional social and emotional well-being area is included in the  areas that the department’s work supporting disabled young people and young people with SEN should cover. 


Within the areas cited Sense believes that a transition offer for deafblind young people should include the recognition that specific services are often required to enable access to other opportunities. Services such as respite, FE colleges, Occupational therapy, Physiotherapy, and Speech and Language Therapy (SALT) should all be addressed as well, since without these services many deafblind people cannot access other opportunities post-18.


5. Service Working Together for Families

In this section Sense makes a number of general statements relative to the questions set out in the consultation document. 


Section 5 - Summary of recommendations

•	The current duty on education providers to co-operate with other local agencies – including health – should be retained. 

•	Local authorities should take on a specific role in relation to the development and funding of education resources for low incidence conditions such as multi-sensory impairments.

•	Local authorities should be encouraged to work together to develop regional programmes of support, including stronger working relationships with the voluntary sector. 


Sense delivers education and school support services to local authority partners across England, Wales and Northern Ireland.  Our principle service offer includes MSI support specialists who work with education providers to support deafblind children to engage with learning. As a result of our experiences of working in partnership with local authorities Sense is in a good position to identify examples of effective integrated working arrangements.

Questions 40; 41; 45; 46; 47; 53; and 54.  

Working Together

Sense welcomes the focus on partnership working between the voluntary sector and local authorities and as well as those between local agencies themselves. As an organisation working with particularly low incidence disabilities we understand the value of VCS organisation in reaching groups that other agencies, in particular local authorities, can miss due to their rarity and complexity. Deafblindness is a particularly rare condition – but one which has huge implications for families, schools and children and young people themselves. As described in detail throughout this consultation response, deafblind children have a specific need for specialist services to enable them to engage with learning.  The range of services often includes social care, and health services in addition to education support – each of which is essential to create a sustainable education offer.  The health needs of children and young people are complex – often involving medical interventions such as gastrostomy – meaning that agencies have to co-operate in order to ensure that needs are identified and provided for effectively. 

For this reason Sense believes that the current duty on education providers to co-operate with other local agencies – including health – should be retained. Maintaining a statutory duty on education settings to actively engage with local health and social care providers would be an effective way of supporting local authorities to bring agencies together in Health and Wellbeing Boards and give force to the proposal in the Health & Social Care Bill 2011 to ‘encourage’ integrated working across services. 

Sense also believes that local authorities should take on a specific role in relation to the development and funding of education resources for low incidence conditions such as multi-sensory impairments. In relation to question 47 specifically, Sense believes that any final funding settlement to education providers in a local areas, including Academies, should make provision for local authorities to retain control of funding for services to support children with multi-sensory impairments.  Specialist support services such as intervenors and communicator guides are essential for deafblind children to be able to communicate and make sense of the world around them. However, the relative low incidence of deafblindness creates barriers to the development of these services by schools, the private sector, or the voluntary sector. This is because the cost of training individuals can be high, and because the market for such services is thinly spread across the UK - meaning that local school markets can be unviable.  Without local authorities to develop specialist services directly there is a real risk that schools will be individually unable to meet the costs of developing specialist support for children with a multi-sensory impairment due to the structure of the funding settlement for low incidence needs. 

Local authorities should be encouraged to work together to develop regional programmes of support, such as those developed by the regional partnerships  and the GEST project  .  These centrally driven locally delivered activities have demonstrated that a collegiate approach to training and developing services has improved the outcomes and learning experiences for deafblind/ MSI children and young people 

Collaborations between local authorities ensure that low-low incidence children with high support needs in terms of skilled educators, qualified assessors, intensive one-to-one support and access to equipment and adapted resources are delivered.  No two deafblind children or young people are the same, as a heterogeneous group support will need to be person-centred and responsive to individual needs.  In reality the effective way to deploy resources is to establish a critical mass to develop the expertise and services required.  Developing expertise is not just about initial training, but the ongoing continual professional development of MSI services to address low incidence needs.  

There are still local authorities who do not recognise MSI exists despite the statutory guidance to do so. Without the appropriate support a group of children and young people’s equal opportunity to minimise the attainment gap is unequivocally removed 

Sense believes that outcomes for young people with complex disabilities such as dual sensory impairments are improved when local agencies co-operate to integrate their local offer. Through our work with local authorities we understand that there are areas of good practice that serve as exemplars of how collaboration within local areas should work together. Sense has strong working relationships and a training arrangement with Suffolk County Council’s Specialist Learning Support Team: 


Case Study – Suffolk County Council’s Specialist Learning Support Team

Suffolk County Council’s Specialist Learning Support Team consists of Specialist Learning Support Assistants (SpLSA), intervenors, and health care professionals.  The service is responsible for delivering specialist support to deafblind children in the county area.  Referrals can be made via schools once a deafblind child is identified, or from the service itself.  

The service represents an example of a strong working relationship between health services, local authorities, and education services – including a joint funding arrangement to support the service where schools individually pay a proportion of the costs.   

Schools for example, agree to pay approx £6,000 per year towards costs for a full time member of staff which allows the budget to be topped up and staff recruited and trained.  This is seen as an attractive offer since it is more cost effective than paying for a full time Teaching Assistant together with the additional training and recruitment costs. The service maintains capacity in numbers to allow for immediate start when a child is identified by fully trained staff. 

Input from health services is high, a recent evaluation stating:  

“The Community Children’s Nursing Teams (CCNT) work closely with the Specialist Learning Support Team (SpLSA team) across the county in the management of children/young people with complex health care needs. The work that the SpLSA team does is vital in supporting the services that we offer as [community nurses]. There are two main areas of support:

•	Training – the CCNT’s receive a high number of requests for training within the school environment and with the complex caseloads each of the teams carry we struggle to meet all of the requests. We have established robust systems where training is carried out by the most appropriate team – the Special Learning Support Team carry out most of the training in schools apart from very specialist training i.e. catheter care where the CCNT will take over. Without the input from the Special Learning Support Team there would most certainly be a waiting list for training which would undoubtedly result in children/young people not being able to access education/activity clubs. 
•	The CCNT also provides an element of short break care. Given the specialist nature of the work that the team does, respite for those most in need i.e. those in the end stages of life, respite care has to be prioritised for these cases. The CCNT works in close partnership with the Special Learning Support Team and they provide respite care in the school holidays for children/young people with complex health care needs, thus enabling the CCNT to provide very specialist care to those priority cases. Without this support children/young people would not receive the level of short break care that they require and families would not be adequately be supported. 

Both teams work in close partnership in ensuring that families receive the correct type of and volume of specialist care. The SpLSA is a vital resource enabling children/young people to access education both in the school environment and, in circumstances where they are too unwell too access school, receive educational support within the home.”

The service is well received by parents, examples of comments from the survey including: 

“I am happy to send my child to school now as I don’t have to worry that she will be left out of day to day school activities and all her care is catered for and she is supervised at all times.”

 
The role of the Voluntary and Community Sector

Question 57: 	What are the areas where the voluntary and community sector could have the greatest positive impact on services for children and young people with SEN or who are disabled and their families, and what are the ways we can facilitate this?
	  
Sense has experience of working with local authorities to support the development of the specialist skills that schools need to enable them to teach deafblind children – whether this is in mainstream or specialist settings. Sense believes that our work in local authorities such as Tower Hamlets (See Case Study above) provides an example of how a centralised service offer can support children with a multi-sensory impairment across a number of education settings. Collaborations such as ours demonstrate the value of local authorities holding a proportion of a local schools budget in order to make available the access to specialist services that they would otherwise be unable to individually justify.  

Examples from the Sense College are also useful in showing the role that voluntary sector can play in supporting local agencies.  For example, in describing the role of the college in building relationships across the education and training sector, practitioners point to the role of voluntary organisation in opening up opportunities for disabled young people with other agencies. For example:  

“The college has forged good partnerships with local special schools which support transition into the college and provides experiential one day college placements for learners during their final school year. Often these relationships have been in place for several years due to our knowledge of the children involved through our work with Sense children’s services. We work closely with local Connexions officers to identify appropriate transition destinations for children with MSI in their last years of school.  We have good working relationships with local learning disability teams that ensures a level of consistency in the specialist support children receive when they move into adult services and reinforces any support children and young people may need e.g. in safeguarding issues.

… The college also works with local general further education (GFE) colleges to jointly support young people who have the ability to be in a GFE environment. In these circumstances there is close liaison on the education, health and care needs of the young person and a person centred learning program would be designed and developed supported by Sense staff specialist expertise”.  

Sense
101 Pentonville Road
London
N1 9LG
0845 127 0060
www.sense.org.uk

June 2011