Sense welcomes the opportunity to respond to Every Child Matters.
Sense is a national voluntary organisation which works and campaigns for the needs of deafblind children and adults, providing advice, support, information and services for deafblind people, their families and professionals. It was founded in 1955 as a self-help group for parents of children born with congenital rubella syndrome. Deafblindness is a low incidence disability. Accurate figures do not exist, but Sense estimates that around 3.1 in 10,000 children have a dual sensory impairment.
The publication of the DES Policy Statement "Educational Provision for Deafblind Children" (March 1989) described the continuum of sensory loss:
"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 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."
Sense recognises that the prospects for deafblind children are dramatically improved with early intervention. We believe advice and family support is vitally important in the early years. We also recognise that babies and young children benefit greatly from integrated development programmes involving families, health, social and education professionals, working together to provide support. Sense employs skilled and qualified professionals - with many year's experience of working with babies and young children - to assess and support developmental and educational needs.
Sense provides support to families of deafblind children in a number of ways, from holidays to family networks and branches. Sense has two Family Centres, in Bristol and Barnet, which provide assessment, support and advice. They work with multi agency teams, including from the statutory sector, to develop a support programme.
Sense co-ordinates the National Organisation of Intervenors. Intervenors are a highly effective and valued support for families of deafblind children. They allow children to have access to the curriculum and mainstream education and promote the inclusion agenda. Within the education setting they facilitate access to the curriculum for the child and their role can be crucial in promoting the inclusion agenda. Within the social/home setting they provide the necessary support for the deafblind child to access play and leisure opportunities alongside their sighted - hearing peers and siblings.
Sense consulted its members about the key proposals in the Green Paper, and the quotations cited in this document are parent's responses to the consultation. In addition, Sense also consulted its Children's Special Interest Group (parents and professionals working with children).
Introduction
Sense believes that the Green Paper outlines exactly what is needed. It demonstrates that the Government is listening about the need to enhance joined up services. It recognises that to change working practices needs both operational changes and legislation to make a difference. It is very positive that parents and families are at the heart of the proposals and the government is committed to working together and changing the culture of work.
However, disabled children are not highlighted enough in the Green Paper. It would be easy to miss out on key opportunities to ensure the inclusion of disabled children. As a result, children with complex needs are the group of children least likely to benefit from the changes in the Green Paper. The proposals do not effectively involve the health service, so those children, who need a high level of medical involvement, will also not feel the impact of the changes.
As one parent summed up the situation:
"We have been told many times 'she is too disabled to access …' or 'her health needs mean she isn't able to do …' or 'sorry we don't have any services to meet her needs'. There has to be champions for disabled/sensory impaired children."
The Green Paper does not recognise or acknowledge the critical importance of the Department of Health Section 7 Guidance 'Social Care for deafblind children and adults'. As Sense has found in its survey of local authorities, implementation is patchy and it is an insufficient priority in many local authorities. The Green Paper is an ideal opportunity to build upon the Guidance and improve social care to deafblind children.
Therefore, we believe that the Green Paper proposals will not solve the myriad of problems deafblind children face.
Chapter 1 - The Challenge
1.3 - 1.8 The goals outlined are very general, worthwhile and easy to agree with. Sense would like to emphasise that disabled children do use mainstream services as well. They would share in the goals but may need targeted support to enable them to fulfil these goals. For instance, it is equally important for a deafblind child to have the opportunity to make a 'positive contribution to the community'. However, in order for disabled children to be involved in community life, they would need encouragement through specialist and appropriate services and better transition planning at 19+ years. Likewise the goals of being 'healthy and 'enjoying and achieving' need specific support. It is recognised in the Guidance 'Social Care for Deafblind Children and Adults' that deafblind children need specialised assessments and one to one support. However many Local Authorities are struggling with implementation and the green paper is an opportunity to standardise opportunities.
1.10 Disabled children are children at risk and should feature in figure 1. The risks that disabled children and their parents' face should be specifically mentioned in the Green Paper. These have been well documented elsewhere; for example by Joseph Rowntree Foundation and Office of Population Census and Surveys. The practical aspects of caring for a disabled child are at the forefront of families agenda, whilst the emotional needs get left behind. Therefore both the practical and emotional side of having a disabled child should be addressed.
A parent of 3 children under 5, the youngest of whom has profound multiple learning disability (pmld) and is multi-sensory impaired (msi) outlined the stresses and strains families of disabled children face:
"Thank you for allowing us to respond. So little help is given to a child with complex needs by statutory services unless you make a real nuisance of yourself. There is enormous strain put upon family life and parental health and finances. We have so little time to campaign as we are continually looking after our children - often for the rest of our lives. The best help has been from charities such as Sense and National Deaf Children's Society who can provide practical help and support. 'Community' help often amounts to nothing as you and your child are seen as a problem."
Ethnic minority families have their own particular pressures and need specific and targeted support.
Early intervention is vital to support parents and children, to identify the disabled child, help with adjustment to the disability, access to services, links with other family networks via charities (especially if a low incidence disability).
"So far have found agencies etc do not do anything unless prompted and if you have a child with multiple problems who does not fit into a 'neat' category you have difficulty accessing anything. Social workers if available are too stretched to help a great deal. … having a child with very specialist needs how do you know what packages are available?"
1.18 The focus in the Green Paper on supporting parents and carers is good. However, there is no specific mention of disabled children and families requiring increased specialist support, eg Figure 6. Sense is pleased with the focus on earlier intervention particularly 'identifying children who require additional support and providing a tailored service enabling them to fulfil potential'; this will be of benefit to deafblind children.
Currently information about specialist sensory services is hard to come by. Families rely upon help from voluntary organisations, as advice from statutory services, hospitals, GPs etc about such services is limited.
"We found the Multi needs Sensory Impairment team and subsequently the Woodside Centre through contacting Sense National. No professional let us know about the existence of such services. We also found out about Portage ourselves and self-referred."
Chapter 2 - Strong Foundations
The strong foundations that Sense is especially pleased with are
- Early Support Pilot Projects (ESPP)
- Section 7 Social Care for Deafblind Children and Adults - more inclusion and more specific one to one services needed
- NSF for disabled children places a central role for health, however it also needs barriers broken down between professionals to make it work. Sense has worked on the framework and warmly supports it and does not wish for this valuable piece of work to be superseded by the Green Paper.
- The anticipated SEN Action Programme which promises to provide, with the NSF for disabled children guidance for professionals and families.
Sense was pleased to be involved in the first phase of the 5 pilots of the ESPP. One pertinent example of good practice has emerged; protocols for onward support for deaf babies with additional disabilities. This example should provide a model for a nationally required protocol. This protocol demonstrates how services should be seamless for low incidence groups, as they leave hospital and move into community support.
2.4 - 2.6 Although Sure Start has achieved a great deal, there is a need to address how Sure Start provides support for low incidence disabilities. There is a danger of deafblind children falling through the net. Few parents of deafblind children have access to Sure Start, yet would benefit greatly from early intervention of this quality.
Family support is essential to strengthen the ability of families to provide effective support to their children. Reference is made to initiatives such as Sure Start in relation to family support. However, for families with children with low incidence disabilities and complex needs, such as children who are deafblind, Sure Start, with its tight generic local focus, is often not able to provide the level of support that is needed. Specialist charities, such as Sense and other sources of specialist good practice need to be included in Sure Start in order to put parents in touch with the kind of unique support they offer.
For instance, one parent told us they contacted Sure Start because they "sought help to find a toddler group where I could take my daughter with profound multiple learning disabilities and was told to contact the hospital!. I got the feeling they were only interested in able-bodied children".
As Sure Start concentrates on deprived areas, it also misses families where the parents had previously successful careers but can no longer work, and are in poverty, because they have a disabled child.
Another layer of specialist advice is needed for families with children with low incidence disabilities and complex needs, perhaps provided by a regional centre or service. Possibly even a virtual Sure Start Disabled Children Centre with connections to specialist support charities such as Sense would be the way forward?
2.15 - 17 The Green Paper gives an impression of moving away from statementing. The formal assessment procedure and the subsequent issuing of a statement are essential mechanisms for ensuring that deafblind children receive the support, which they need in order to access learning opportunities. Successful learning for the deafblind child requires input from specialist advisory teachers and a range of therapists. Even though there is a lot of paperwork and the speech and language therapy, occupational therapy and physiotherapy identified as needed is often not forthcoming because of shortages, the assessment process provides essential information on which to build plans. Moreover, there is no opportunity for parents to go to tribunal for non-delivery of these services if they are part of the non-education section (6) of the statement (e.g. OT and physiotherapy).
2.20 Sense believes that all children should have access to full service extended schools. We trust that the activities on offer would also be available to disabled children. Parents have highlighted that meeting the individual communication and support needs of the deafblind child, training of staff, as well as transport to the extended school would be the major challenges that needs to be overcome.
Parents have told us that the extended schools would need "Wider knowledge about deafblindness and understanding that deafblind children need consistent and familiar adults and intervenors to support them in any activities. Activities should be the same as for all children".
"Help deafblind children join in out of school activities …By having intervenors that are specifically trained to work with these children."
Extended schools, therefore, should offer equal access; training for staff; individual support for disabled children; and transport. This should be part of the formal criteria for becoming an extended school.
We would welcome special schools being encouraged to become extended schools. This would provide the opportunity of an extended curriculum for disabled children, leisure clubs, lifelong learning, IT skills and flexible arrangements for working parents etc. These developments would be greatly valued by parents of disabled children.
As one parent replied: "great! I would be able to work part time or even go out for a few hours, which I can't do now as a full time carer with two other children also. No one wants to take a child with profound and multiple learning difficulty (pmld) at the moment."
2.26 - 7 Specialist Health Services. The specific mention of the importance of speech and language therapy for children to develop communication skills through the use of speech, sign and/or augmentative communication methods is very important and Sense endorses this statement. However there are other therapies which are just as important for deafblind children. For instance, paediatric physiotherapists and occupational therapists in addition to a specialist speech and language therapist who has training and expertise in the area of hydrotherapy. These help develop life skills and should not be overlooked.
(Specialist sensory) "services rather fragmented and not always suitable for deafblind users. Some very difficult to access - occupational therapy in our area has a 1-year waiting list. Speech therapy has also been very patchy. Would like it all standardised and hours of access per week set out and achieved."
One parent described what is needed. "Pre-school advice about communication aid and augmentative communication as well as speech therapy. More therapists to work in pre school and school settings. Help for children who do not go to school. Help for schools who do not have their own therapists or regular access to one."
It is very difficult to get therapeutic support and the therapy is often not fulfilled.
"Urgent need for more therapists with relevant experience. In our area (Bradford) there is one part time and term time only therapist to see all children with complex needs and feeding problems. We've had two meetings in 14 months but only because I've been pushy as she has hundreds of children to see."
To illustrate the problem, one parent outlined the need for more paediatric audiologists - "in my local authority there is an 11-week wait between appointments to get new hearing aid moulds. More liaison between health and education, especially in early years (under 3's). More liaisons between hearing and vision services within education as no one can advise on MSI."
The low numbers of specialist speech and other therapists, therefore, needs to be addressed in the workforce strategy.
Mental health services. Sense has responded to the consultation 'Sign of the Times'. The recognition in 'Sign of the Times' of the crucial importance of early identification of sensory difficulties and early intervention is welcomed. For deafblind children the importance of receiving specialist early intervention is crucial to their development, and physical and emotional wellbeing. Sense has extensive experience of providing assessment and support to deafblind children, and is involved in the DFES early support pilot programme - 'improving services for disabled children under 2'. Ideally early intervention should be a partnership between health, social services, education and parents. We would therefore agree that the increased involvement of health in this process would be beneficial.
As parents have told us, mental health services are practically non existent for deafblind children.
"There is too little service for deafblind children and access seems to be dependent on where you live. It needs to be expanded and easily accessible to families. Generally speaking CAMHS are non-accessible to deafblind children, so they are ignored."
Deafblind children with mental health problems and degenerating conditions need careful and sensitive handling by professionals. Clinical depression, which may be characterised by mood swings, and can lead to self-harm, is hard to diagnose and therefore can be unacknowledged in deafblind children.
For instance, "It was a long time, too long before my daughter's problems were recognised, not as behaviour problems or personality disorder, but as mental illness. No professionals suggested using a mental health approach when she was a child".
Sense would like to see a Government strategy on Deaf mental health services arising out of 'Sign of the Times' implemented across child and adolescent services.
Sense has a successful mentoring project for adults with Usher syndrome, which places newly diagnosed people with Usher syndrome with peers and provides vital support at a difficult time. The mentor programme was originally set up for adults, post 16 years old. Sense does, however, receive requests from schools for the deaf and social services, for peer support for young Ushers still in the school system. They may be traumatised by a new diagnosis, lack understanding about Usher syndrome or are interested in meeting other young people with Usher. Our youngest mentors are 25 years old and deal with any enquiries with teens by meeting with them in their schools. Sense are currently looking at ways to address the needs of the Usher/deafblind school population as more people are being diagnosed earlier. The way they are 'mentored' is also being considered: either by small groups and/or drop-in 'surgeries' at the school. There are currently 6 young people being 'visited' at three schools by one of our mentors along with a member of staff from the Usher team. For children pre-teen, as far as the mentor programme goes, we would try and put the parents in touch with other parents of Usher children. This is certainly a growing area which needs further exploring, and a pilot young person's project could be trailed to support young people with Usher syndrome using their preferred communication method, and be designed to be respectful of their family and cultural background.
2.40 Young People's Fund. Sense has responded to the Children's Play Review and the issues are similar. Deafblind children require more than adult supervision to be able to access play. They need skilled human interaction, for example an intervenor, to allow them to access play. This means that they may not be able to access play provision in the same way as other children. For instance, their ability to come and go as they please will be limited. Leisure activitites may need to be structured to give this support and allow them to access play. This means that deafblind children's needs may be for more structured play opportunities and the priorities should not exclude this group of children from support.
"I support her [at guides] even though I don't think this is the best practice - there is no body else."
(Sense survey, 2002)
"[My child would like] teenage activities, swimming, hydrotherapy, horse riding, outdoor activities, sensory stimulation, visits to places of interest. But would need trained support to do this and appropriate facilities to access."
"At school [her needs are met], but she doesn't exist in holidays."
(Sense survey, 2002)
One parent noted that she would like to see "Toddler groups/activity centres for children under school age, which could incorporate children with MSI. There is nothing for young children except hospital therapy and medical appointments".
The money for activities in the community for disaffected young people should include disabled children. However, those with low incidence disabilites should not be excluded by a funding mechanism which focuses entirely on local initiatives. This might mean, for example, top slicing some funds for projects which would not be viable on a local basis. Unless this is done there is a danger of excluding some of the most marginalised and disadvantaged children. Because deafblindness is a low incidence disability local solutions will not always meet their needs. The low incidence means that deafblind children are often isolated in their communitites, there are few other deafblind people nearby. Local provision is unlikely to meet their needs, and there is often a lack of awareness of the needs of deafblind children. Regional and national events are often needed to provide opportunities for deafblind children and their brothers and sisters to come together to access play and leisure. Parents of deafblind children often have to travel to events because there are not sufficient numbers to provide suitable services in their immediate locality.
School Clusters. Such schools will be expected to establish 'links with community schools'. However, if this was strengthened so that one of these community schools should be a special school, it would make inclusion easier.
Chapter 3 Supporting Parents and Carers
3.3 The universal services highlighted would also benefit parents of disabled children and need to be available to all families. Improved communication between parents/child and school is a very positive statement. Sensory impairment, especially deafblindness, has an impact on the development and behaviour of a child. Therefore, the joint training on development and behaviour issues for children's professionals needs to cover disabilities that cause a developmental delay.
A parent told us that there needs to be "A greater understanding of the deafblind and associated problems so that from pre school through to adulthood and beyond is one smooth journey".
3.4 The specialist parenting support would be very important to parents of deafblind children. However, it is important for services geared towards low incidence disabilities that the professionals have specialist expertise, and particularly are MSI trained.
There is a lack of respite care for families of disabled children. Families need a variety of different forms of respite care both daytime and nightime, at home and away from home. Specific funding to increase the amount of respite care available is needed. The quality of respite also varies considerably. For deafblind children the communication support and consistency of personnel is vital, yet this is rarely considered. The rigid nationally agreed shift patterns do not allow person centred planning of services. There needs to be more flexibility of respite care to deliver better services.
"We have been waiting for respite since about May. Two social workers have left and it's down to another new one to start a complex assessment. We have had 4 or 5 social workers and our daughter is only 7."
Intervenors provide a form of respite care, by providing one to one support to the deafblind child they free up the time of the parents for a few hours a couple of times of the week. This gives the parents time to focus on the needs of siblings or to do other things.
CASE STUDY: Lincolnshire Social Services Intervenor Scheme employs intervenors to visit service users and their families during evenings or weekends. The scheme has expanded in recent years. The scheme's manager explains, "Having a scheme, rather than individual packages, means we can plan how to use our resources and employ a number of intervenors. The greatest benefit I see is in helping children to develop their potential, but it also has real benefits for families. Whether it's time to catch up on ironing, do something with your other children, or just put your feet up with a gin and tonic, it's something practical and positive. If families don't get any support, it may lead to family breakdown." Intervenors also work closely with families to help them to find ways to communicate with their children. A Lincolnshire parent whose 15 year old deafblind son received support from the scheme, said, "Looking after Stephen was a 24 hour job, and having intervenors come into the house two evenings a week was like a gold mine. It gave me time to speak to my other children and to do things like spelling tests with them. We used to say that the night the intervenor came was the only time we got a proper meal. The other children have each other, or can watch television, but it was hard to cope with the guilt feeling of Stephen just lying there. He would have no stimulation unless you were touching him or putting something in his hand." Now Stephen is learning to read and write, he has joined the Scouts, his confidence has developed and he has made some friends. According to his mother, the intervenors have helped in numerous ways, including feeding and choosing toys, through to helping Stephen learn to understand his environment. "They've taken him out for walks, and it might be only 500 yards down the road, but there's so much stimulation. You can pick up a leaf and crunch it near his face, so he can smell it. We still do that with him. I can't understand why everyone with disabilities like this can't have an intervenor. It introduces them to the outside world, and otherwise they are just so isolated."
3.7 Direct Payments. Few of our parents have experienced direct payments and there exists a lot of confusion.
"We don't use direct payments because:
- Only just become available
- Needs a great deal of time to sort out
- Worries about being an employer and the responsibilities this entails
- It is a long drawn out process."
Direct payments "gives excellent opportunities for flexible approach to meeting child's needs but - very lengthy assessment process, very little support with managing budget. Information about budget isn't clear. E.g. working out tax, NI etc. More training of people in social services is needed. I seem to know more than they do! Very long delay getting the money".
There is therefore, a need for practical information and guidance for parents about the scheme.
3.8 Parents who are not experienced with employment law would be hesitant to take on this additional role whilst they are already over burdened with other pressures. Parents of deafblind children are likely to need specialist staff, eg interveners, which are not easy to find, train, develop, or manage. This is too complex a service to manage for many parents. Direct payments may help if a family wishes to employ a family friend to help with specific roles (eg accompany to and from a club). Low take up of direct payments by parents of disabled children could also be explained by fears about child protection issues. At transition to adulthood (16+) there are security and access issues.
"I have used the old form of direct payments but would say I found the burden of being an employer difficult on top of the caring role. Plus if you are on your own, you have no back up for illness, staff leaving etc. It is back to you again. Also, if it happens in your home, no break for you if there, as you can't switch off. More support is needed."
Direct payments should not absolve local authorities of the responsibility to provide specialist services to families of disabled children.
3.26 Residential care. Parents should continue to have the choice to opt for residential special schools. Recently, it has been reported by families of deafblind children, that they are experiencing difficulty accessing the appropriate support for their child. It has been strongly suggested to them that fostering locally would be more appropriate than sending their child to a residential special school. However, this does not necessarily take into account the communication support needs of the child. Residential special schools provide a waking hours curriculum, where the communication support needs of a child are consistently delivered. Moreover, they provide opportunities for a richer lifestyle and peers they can communicate with, which are not always present at home or in the foster home. Parents should continue to have a choice over education provision, including weekly, termly, or 52-week boarding schools. There should be fewer stigmas attached to choosing a residential school.
Chapter 4 Early Intervention and Effective Protection
4.4 Sense welcomes the recognition of the voluntary sector as integral to the information hub (described in Figure 1). The government has successfully identified the barriers in 4.8, but should not under estimate the professional and cultural barriers. Sense has found that joint training helps to develop joint working. Professionals need shared goals, particularly a supra national goal, shared funding and similar management.
4.13 Assessment. What is described in the Green Paper is not a framework for assessment suitable for a deafblind child. Sense carries out functional observational assessments, which takes longer, but provides better quality information and a holistic view of the child. This approach is more finely tuned to meeting the needs of complex disabilities, rather than a common tool. Parents should be invited and welcomed to provide information, as parents know their child best. Parents are an essential part of the assessment process, they provide an insight into their child's strengths and their needs. They provide important information from outside of the assessment (i.e. clinical information received from other involved professionals and functional information on how the child responds in a range of settings). Parents are also participants in their child's learning and development and their role should be valued and encouraged. Assessments should be shared and agreed with parents.
"This appears to be a good idea but parents need to hold the master copy and amend changes, as we are the ones co-ordinating services. Too much can be written in error about a child following a single visit. This is very difficult to have amended later once information is circulated."
Section 7 Deafblind Guidance gives a right to a specialised assessment, but not all local authorities have specialist trained staff nor have given it the priority. Government should make sure Local Authorities carry out their statutory responsibilities and make it a priority.
4.18 Lead Professional. Our parents would largely support the role of a lead professional.
For instance, one parent thought a lead professional would help them "find their way through the jungle of where do I go? Or what should I be doing? But help from somebody to smooth the passage".
However, there are a number of concerns about the capacity and practicality of the role.
"Would any one professional have the time or commitment to fully take on this role. Most parent/carers are the driving force behind accessing services etc."
A lead professional would be helpful "… but they need to be an MSI specialist. I don't need somebody who can just help me arrange my diary".
"The lead professional needs to be someone already involved with the child, rather than an extra person and also needs to be someone with the power to make decisions and get things sorted".
4.23 Sense's experience of working in a multidisciplinary scheme has worked well in the Early Support Pilot Project. It also highlighted the views of parents on joint working.
Therefore, the view of parents on joint working should also be considered.
"most professionals in multi disciplinary teams think they work well together but the view is often very different as a parent. Parental views need to sought within these teams continually with feedback about service provision and need."
Unique Identity Number. Parents need assurances why a unique identity number would be necessary and how it would lead to better services. Parents are concerned that their child would be reduced to being a number and would prefer the child's name to be used in correspondence. Children are given a variety of numbers, for instance the pupil number and health number. Would it be possible to utilise the National Insurance number at birth as the unique number?
It needs to be made clear to parents the circumstances when information would be shared without parents consent.
"I would not mind info being shared with all involved in his care but I would want to have regular access to the info to make sure it is accurate and be informed of who had access to it at regular intervals. I would want to be told the specific reasons for sharing the info with any new parties."
"If it means an improvement in services then I don't have a problem. I would wish to be consulted on what information is kept on me and my child and whom this is shared with. Parents/carers should be able to censor information and authorised who it may not be shared with."
"This could only work well if it was clearly defined over who should provide which types of information. There is more likely to be gaps in information rather than duplication. Parents/cares should be part of this process if they want to be. Reports and assessments should be verified with parents/carers prior to them being shared."
Chapter 5 Accountability and Integration
5.8 - 5.11 Sense agrees with the description of local and national fragmentation and the creation of a Director of Children Services and lead council member for children. However the Director would need knowledge of both education and social services, as it is difficult to take on such a role without such general knowledge. In addition, Sense has found that, although Local Authorities are appointing a senior manager with responsibility for the implementation of the Section 7 Guidance, Social Care for Deafblind Adults and Children, it tends to be from staff from the Adult Care side. This means that in many authorities there is no one pushing the implementation of the deafblind guidance for children. Sense would recommend that the Children's Director should name a senior manager to take responsibility for deafblind children as well.
As one parent demonstrated the problem in Social services and Health - "Sensory impairment bounced between visual impairment and hearing impairment - no one prepared to try to marry the two together. Children's services - kept at a safe distance, hiding behind the sensory impairment label. Health - each discipline blinkered - unable to see beyond their specialism."
5.12 Sense is concerned about the push to create Children's Trusts before the pilots have had a chance to explore different structures and strategies. We envisage there would be a role for Sense within the Children's Trust, but would prefer to develop a model through the pilots first. There should be a separate evaluation of the children's trusts that involve disabled children.
5.15 Sense would be happy to contract services with the Children's Trust to bring in our specialist expertise of working with deafblind children. We would welcome the opportunity to work within a trust where joint responsibility means that the overlapping needs of the child and the family within both social and educational contexts no longer act as a barrier to identifying the necessary resources required to ensure access to the necessary specialist services and support.
5.27 Sense is keen on regional services because they provide more efficient and effective services for low incidence disabilities when they are difficult to provide locally. The introduction of small unitary authorities has compounded this problem as it means the number of deafblind children is even lower and they have found it difficult to respond in a cost-effective way.
5.36 An integrated inspection framework across children's services would be helpful. The section 7 Guidance, Social Care for Deafblind Adults and Children should be part of this.
5.50 Sense warmly welcomes the creation of Children's Commissioner and stress that the Commissioner needs a general understanding of disability and particularly the impact of dual sensory disability.
Chapter 6 Workforce Reform
Sense believes that it is essential to reform the children's workforce.
One parent summed up the changes needed "… they need a basic knowledge of disabled children's needs and should have more specific training if they work with sensory impaired children/pmld. If inclusion is to work, more training is necessary. Need for better pay scale and conditions".
6.3 There is a shortage of specialist teachers; particularly MSI, visual impairment and hearing impairment teachers, speech therapists and specialist learning support assistants.
"In Suffolk we have no specific teacher of MSI and this is what is needed. Teachers of visual impairment and hearing impairment are very good but need the MSI one as well and this person should be the main person to provide regular support and reaching the family from the beginning."
Sense has carried out a workplace survey of intervenors and found that their qualifications are not recognised nor rewarded in their pay. As a result LEAs place intervenors on the same reward level as generic nursery nurses and do not value their specialist training. This results in low pay and low status for interveners, and a corresponding shortage of recruits. There should be rewards for extra specialist qualifications, eg British Sign Language.
There are low numbers of speech and other therapists and these need to be addressed in the workforce strategy. The role of assistants working with therapists needs to be carefully monitored to ensure that professional standards are guarded. More funding is needed along the line of teacher training incentives. For instance, currently the Speech and Language Therapy course is 4 years long, earnings do not reflect the sacrifices they have made. Courses are not geared towards addressing the needs of disabled children who need communication therapy, for those who have difficulty-acquiring language and need support for feeding. On-going professional development in this area would help.
6.15 Sense, Deafblind UK, RNIB and CADCP are developing a deafblind diploma that is currently in its second trial year. Sense is pleased with the development of the post-graduate mandatory qualification for teachers of multi-sensory-impaired children at the University of Birmingham has resulted in a wide variety of educational responses to meet the needs of this low incidence group of children. A similar course at Whitefield School and Centre in conjunction with Kingston University has also achieved good results.
6.41 The core skills and training for all children professionals should also feature 'valuing differences', 'equal opportunities' and 'working in partnership'. They should gain a general understanding of disability as well as deafblindness and ideally learn about different communication methods, as well as, where appropriate, British Sign Language.
"There is never anyone who can communicate with the young person. Deaf awareness training is a must and basic sign language. Even audiologists do not sign and I often do the signing."
Sense is pleased that the Government is planning a recruitment campaign, and that the Government wishes to enhance the status of children's' work. Sense is part of the Social Care Employers Consortium and would like to see an overall increase in pay and status of care work. Working with deafblind children is challenging and only certain people will have the skills and capability to do it. Sense has discovered that there can be an initial high turnover rate in caring jobs, but if the person is suited to the work, then they are hooked. We do not want to lose these people because there is no chance of career progression, better pay elsewhere for less demanding jobs, and a lack of status.
"Whilst it is important to make working with children more attractive the priority must be the child's needs. Our children must be seen as more than a job or opportunity to further ones career."
Motivation to work with deafblind children is still essential, we need to attract and keep people who have a calling, or vocation, and want to make a difference.
1 December 2003
Pauline Graham
Sense
11 - 13 Clifton Terrace
London N4 3SR
020 7272 7774
Appendix 1
Examples of Sense's work with children
Education has always been one of Sense's major concerns and since the 1980's it has initiated and supported a variety of partnership activities with LEAs and specialist schools with a view to achieving the following broad objectives:
- increasing awareness of the educational needs of children who are deafblind/multi-sensory-impaired;
- increasing the specialist educational support available to this group and ensuring entitlement;
- promoting and supporting LEAs, non-maintained specialist schools and others in the provision of services to this low incidence disability group of children.
The Family Centre at Barnet provides a range of support for families within the southeast region. Contact with the Sense staff can help parents build both their understanding of the child's needs and build the confidence they require to 'manage' and become an equal partner in the team of local professionals involved with their child. For one Early Support Pilot Project family, visits to the Centre for assessment provided the opportunity for the local professionals to see the child demonstrating skills, which were an indication of their learning potential. Sense, the family and the local professionals are currently involved in integrating and supporting the child in their local mainstream nursery. The family also visit the Saturday Club run at the Centre by Sense; the family are able to enjoy a range of activities which meet the needs of their deafblind son and his older sighted-hearing sister. The family 'day out' also provides the chance to meet with the families of other deafblind children and to share experiences. Trained volunteers mean that for part of the day the families can have a cup of coffee and a much needed sit down knowing that their child is involved in a fun activity alongside other deafblind children and their siblings.
