Sense Cymru is the national charity working and campaigning for deafblind children, young people and adults.
Children and young people who are born deafblind often have a range of sensory needs. For this reason, we tend to use the term Multi-Sensory Impairment (MSI). Much of what we learn about the world around us comes from our eyes and our ears. Children and young people with MSI therefore face significant barriers and require specialist support to enable them to learn and thrive. These barriers can often be different to those faced by children with a single sensory impairment.
MSI is a very low incidence condition; there are around 200 children and young people with MSI in Wales. Not all children and young people with MSI have this listed as their major or primary need, though it will profoundly affect how they engage with learning opportunities available to them.
The reform of existing Special Educational Need (SEN) systems and structures presents an opportunity to improve the way in which learners with MSI are supported.
While aspects of the proposed Bill are to be welcomed, further amendments are required if it is to operate well and effectively support learners with MSI.
A Response from Sense Cymru
1. The importance of ensuring that learners with MSI access the specialist assessments, advice and support required at the earliest opportunity
MSI is a low incidence need and therefore requires specialist assessment. Social Services and Well-being (Wales) Act requires local authorities to arrange for an assessment of deafblind children and young people by a specialist who is appropriately qualified in the field of deafblindness/MSI. Children and young people with MSI who are being assessed to determine their Additional Learning Needs (ALN) and Additional Learning Provision (ALP) must have the same right to input from a specialist in MSI. This specialist must be suitably qualified by holding the MQ and the Code of Practice for ALN must clarify this right.
It cannot reasonably be expected that a nursery, school or Further Education Institution (FEI) will have the knowledge or capacity to be able to appropriately assess and meet the learning needs of a child or young person with MSI.
Recommendations:
Specialist Teachers holding the MQ in VI, HI and specifically MSI
· Provision from a teacher holding Mandatory Qualifications (MQ) is always necessary with every child who has MSI. The Code of Practice must explicitly acknowledge this and place a statutory obligation for this. IDPs should also note this as an entitlement.
· Specialist teachers are likely to be employed by the Local Authority Education Inclusion Team. These roles must be maintained and centrally funded.
2. The need for clear, robust support plans that clearly identify a learner’s needs and the support they will receive.
The viability of the reformed system will depend upon robust support plans that provide transparency, portability and legal protection.
IDP must not represent a backwards step in comparison with the Statement and should have legal requirements to the entitlement of an IDP as well as the provision contained within it. The ALN Bill and Code of Practice must be clear on what an IDP is; it must be robust and outline key ongoing support needs, such as the provision of interpreters or the maintenance of equipment.
Recommendations:
· Children and young people with MSI will have complex needs and therefore always require an IDP that is maintained by specialist involvement. This must be explicitly noted in the Code of Practice.
· The Welsh Government imposes a national statutory template for an IDP.
· The Welsh Government works with third sector organisations in developing such a template.
· A national template for an IDPs should note all of a child or young person’s needs, including sensory impairments, not only their primary diagnosis so that they are appropriately supported.
· Local Authorities should always be responsible for preparing and maintaining the IDP of children and young people with MSI, given that specialist involvement will be provided by the Local Authority inclusion team.
3. The need for the Bill to be effective for the full 0-25 age range.
The move to an ALN system that operates across the 0-25 age range is warmly welcomed.
Replacing the term ‘Education’ with ‘Learning’ in the definition of ALN is also to be welcomed. However, ‘learning’ must be broader than the traditional education setting. This has implications for children in the early years who will learn in home and community settings (as well as YP in non-traditional education settings) and will require involvement of teachers with MQ from birth.
However, we are concerned that the Bill does not include sufficient measures to deliver on its promise of a 0-25 system. On the whole, the Bill lacks detail on how systems will operate within the early years and post-16 contexts. There is clear information in the latest draft Code of Practice about the duties of schools and FEIs to refer to specialist services. However, the lack of detail about how the system will work in an early years context could result in this age group struggling to access appropriate support. For children with MSI early years and learning begins at birth.
Recommendations:
Early Years:
· More detail and statutory obligations that reflect learning in the broader sense outside the educational school setting and thus recognising a child or young person’s social and emotional development, the role of play in learning and importance of learning skills for life. This will reinforce the fact that the reforms don’t just apply to formal curriculum based learning of school aged children. Learning begins from birth and the reforms should outline more clearly the need and provision of children from 0-3.
· Referral pathways for health visitors etc. are required; as is clarity on how the IDP process will operate in the early year’s services. The system needs to be clear and quick from identifying support needed to getting the support. The health visitor needs to be key person to identifying needs and linking in with support as they are most likely to be in contact with the family in those initial stages. Specialist teachers with MQ will work with families to support children’s development from birth, particularly with communication, which is crucial in their development, but only if those children are picked up by health and have a duty to refer to specialist support. There should be a clear duty on health visitors to refer to local authorities.
Post 16
· IDPs need to be linked to Social Services for young people who are post 16. This should be a legal requirement so that young people’s learning and development does not just stop when they leave education in the traditional setting and where there is no suitable learning placement but young people are too young to receive support from Adult Social Services.
Effective coordination of agencies is essential for all children and young people under the new system. To avoid support being dampened down for children and young people with MSI and complex needs, coordination needs to be with additional agencies outside education.
We are disappointed that the Code makes no reference to habilitation whatsoever, or to the qualified professionals required to assist a child or young person to become as independent as they can be and to achieve their full potential. The Code of practice on Part 2 of the Social Services and Well-being Act references the importance of local authorities and Local Health Boards working together to fund and resource the provision of habilitation services for its population. This should be built on in the ALN Code.
Recommendations:
· The Code of Practice should be specifically worded to include ‘Habilitation’ (assisting of a child with achieving developmental skills when impairments have caused delaying or blocking of initial acquisition of the skills and supplying a person with the means to develop maximum independence in activities of daily living through training, education, and/or treatment).
· Habilitation specialists can teach children and young people with MSI to move around as safely, efficiently and independently as possible. Young people with MSI who are able to move around freely, learn better and become more confident, self-sufficient and, later on, more employable.
· As habilitation spans across a child or young person’s learning, social and independence skills, it often does not fit clearly within any single agency’s responsibilities. Agencies will need to work together to ensure that a child or young person receives the appropriate habilitation training without delay; this will involve effective collaboration and clarity about what is being funded and by which agency.
· As children with MSI are likely to have health and social care needs and plans, there should be a statutory obligation for these to be coordinated with the production of the IDP.
5. Ensuring that advocacy and dispute resolution systems are appropriate, accessible and robust.
At present, the Bill neglects to mention advocacy or parent partnership services for parents. Parents require a service, independent to the Local Authority and Schools to provide advice, support, guidance and early disagreement resolution.
Recommendations:
· A statutory obligation for impartial and independent support for parents of children with additional learning needs to complement advocacy provision for children and align with the principles of early disagreement resolution. This must be free of charge to parents/families.
· Advocacy and support services are equipped to meet communication needs.
· It is imperative that advocacy services are explicitly free of charge for families.