SCN0466

Written evidence from Action for Kids

1. Summary

1. Little effort is made to facilitate young people to contribute to planning their own support. EHCP/Review meetings are often held without the young person being present;

2. There is a chronic problem with professionals not turning up to EHCP or review meetings or, if they do, they have never met the young person;

3. Many professionals persist in viewing ECHPs and reviews as simply about the next year or the next change of provision/transition, not about preparing for the long term;

4. The negative practice of “labelling” children and young people with simplistic, misleading stereotypes is very prevalent;

5. Demand for 19-25 education and training provision is driven by the failure of SEND education at 16-19;

6. New models of 16-19 schools/colleges, focused on preparing for work and life, are desperately needed;

7. All schools and colleges should be made significantly more accountable for preparing their pupils with SEND for work & independent living;

8. Much employment support is inadequate for learners with autism, learning disability and communication/interaction difficulties.

About my AFK

2. my AFK is a charity with a mission to give as many disabled young people as possible the opportunity to work or volunteer in their community ( www.my-afk.org ).

3. We were founded to provide mobility equipment that is not available on the NHS – powered and manual wheelchairs, trikes, walkers etc. We provide this equipment to young people across the UK.

4. We are also a well-established provider of support to young people with SEND, aged 14–25, including short breaks (school holiday) programmes, education and training services, work experience and an employment support programme.

5. We have partnerships with over 40 schools and colleges from nine London boroughs, working closely with teachers and students to provide individualised work experience placements and to teach employability skills from our office in Haringey. In order to provide semi-sheltered work experience opportunities, we partner with a bike shop/community café and an ‘edible’ garden. The latter is in partnership with the Canal & River Trust.

6. Our employment support programme works with young disabled people, typically aged 19-25, to undertake work preparation training and work placements leading to paid work. We have a team of specialist employment brokers/job coaches who have experience in finding and supporting work placements, matching candidates with suitable employers. They provide support to employers and deliver disability awareness and “reasonable adjustments” training. We work with 50 employers across London and we consider our employer partners to be key to our success.

7. 88% of the young people we placed into paid work during 2014-16 remained in work at least one year after finding employment.

8. We have a strong focus on self-advocacy and co-produce our programmes with young people so that they can learn to speak up for themselves, become more confident, empowered and self-reliant. This, in turn, improves their resilience in both employment and independent living.

Introduction

9. As a charity that is actively involved in working with disabled young people, our key concern is not with the national policy framework (Children & Families Act and SEND Code of Practice 2015 etc), but rather with the way that it is implemented by local authorities, schools, health and care organisations, voluntary sector providers and regulators such as Ofsted. Although there are significant concerns about the level of funding – large deficits in local authority High Needs Blocks are common – this will no doubt be covered by others. We are focusing on how the current funding is spent. The following sections focus on two areas: assessment and support and support into work.

Assessment and support

10. The SEND Code of Practice 2015 (the “SEND Code”), although very long and hence not very accessible to young people and their parents and carers, does create an excellent procedural framework for identifying needs and agreeing long-term plans for supporting children and young people. As well as involving, for the first time, representatives of health and social care, it focuses on the right of young people and parents/carers to be actively involved in decision-making. However, in too many cases, the reality of the process falls far short of the SEND Code’s intentions and requirements.

11. Frequently, little effort is made to facilitate young people to make their contribution. Review meetings are often held without the young person being present or, if they are present, no effort is made to make the process less intimidating and effective. We encourage the use of video so that the young person can express their views in ways, times and places that are less stressful and more effective at getting their points across. Unfortunately, this is not a common practice, partly because it requires time and effort.

12. There is a chronic problem with professionals (particularly, but not exclusively, from health and social care) not turning up to EHCP or review meetings or, if they do, they have frequently never met the young person. However, these meetings are taking vital, life-changing decisions about vulnerable children and young people. Decisions are frequently made on little evidence and even less understanding of the individual and their life. This can have direct implications for the assessment of need and provision of support. For example, a my AFK staff member attended a review meeting at which the young person’s mother was pushing for speech and language therapy. A “professional” was arguing that the young person did not have any form of speech impairment – the young person was not in the room and the professional had never met them. Fortunately, my colleague had with her a video of the young person talking, clearly with difficulty, and the essential therapy was agreed. If the professional had had their way, a serious problem would have gone untreated. Sadly, all too often the outcome is not so satisfactory. It is depressing to realise that the accused in a criminal trial gets to be in the same room with the judge and jury, but the same consideration is not extended to disabled children. This behaviour by some professionals reflects apparent contempt for the system and the disabled young people and undermines the entire process.

13. Short term planning: Despite the SEND Code clearly emphasising the need to take a long term approach to planning support for individual young people, many professionals persist in viewing ECHPs and subsequent reviews as simply about the next year or the next change of provision/transition. Another example from our work: a my AFK staff member attended an EHCP meeting at which the local authority representative flatly refused to consider, or even allow to be discussed, anything beyond 12 months. Looked at from a strategic perspective, what the young person does next year is not really important, what really matters is what they will do at age 30, 40 or 50. It is imperative that the support to be provided now is based on the future - where the young person wants to get to in their lives.

14. Labelling: Another issue with assessment is not new but remains significant, namely labelling of disabled people – autistic (ASD), severe learning disability (SLD), visually impaired (VI) etc. Whilst some use of descriptions can, occasionally, be helpful it can quickly become highly problematic as it draws people to the false assumption that everyone in the labelled “group” has similar needs and capabilities.

15. Around half of autistic people also have a learning disability. A third of people with a learning disability are also autistic (http://www.autism.org.uk/about/what-is/myths-facts-stats.aspx ). Yet, the education system increasingly focuses on the “primary need” – you cannot have both autism and a learning disability as your primary need. Bureaucratically, one category must be dominant even though the priority is simply the result of which need was formally identified first. This leads to two consequences: resource allocation being skewed, and individuals being stereotyped and not given appropriate support.

16. Resources allocation: The following is a quote from the Place Planning document produced by a local authority: “Demand for specialist in-borough provision for …. ASD …. is close to capacity [This] .... must be seen alongside the recent trend for increasing ASD place demand ….”. Yet, given the overlap between autism and learning disability, the demand could just as easily be seen as demand for places for people with learning disabilities.

17. Inappropriate support: Not every autistic person is the same. The abbreviation of the phrase “autistic spectrum disorder” to ASD conveniently allows us to forget that it is a spectrum and a very, very wide one at that. The difference in the support needs of one autistic person compared to another can be huge. The SEND Code explicitly recognises this: “In practice, individual children or young people often have needs that cut across all these areas and their needs may change over time. …. A detailed assessment of need should ensure that the full range of an individual’s needs is identified, not simply the primary need.” Simplistic, label-based “identification” is damaging. In our work we try to avoid labels, mainly because we know how unhelpful they can be.

Provision for 19-25 year olds

18. Whilst we appreciate that the Inquiry’s Terms of Reference address support for independent living and work in the context of 19-25 year olds, we suggest that this is an artificial age divide, based on funding streams rather than need. We also contend that issues about 19-25 provision are directly affected by issues with provision for 16-19 year olds. The challenges to be addressed should be couched as “how do we get disabled young people into paid work as soon as they are ready” and “how do we enable disabled young people to live as independently as possible as soon as they are ready”. Disabled young people are ready for work at different ages. Some are ready at 18, the same as their non-disabled peers whilst some mature later and hence are ready in their mid-20’s.

19. Our experience indicates, very strongly, that demand for employability training, support into work and for independent living, at age 19-25, is a direct result of the widespread failure of pre-19 education and training.

20. Despite clear policy direction, in the SEND Code and elsewhere, disabled young people, especially those with autism and/or a learning disability, are often very poorly served in terms of preparation for work and the ability to live more independently. Ofsted reported in March 2016[1]: “Provision [is] not focused sufficiently well on preparing learners with high needs for adult life” and “… too much provision lack[s] meaningful work experience.”

21. As a direct consequence, disabled young people are significantly less likely to be in employment and their education or training typically ends at 21-22 years of age. The statistics are clear:

1. only 50% of disabled adults are in paid work compared to nearly 80% of non-disabled adults;

2. only 32% of autistic adults are in paid work, falling to 16% for full-time work[2];

3. only 5.7% of adults with a learning disability in England are in paid work, a figure which has been falling for the last 3 years[3].

22. These statistics sadly demonstrate that the current models of 16-19 education (and indeed younger) are failing to prepare disabled young people for work and independent living.

23. The problem is growing. A number of notable demographic trends are pointing to a significant increase in the demand for special school provision for 16-19 year olds, increasing the pressure on the quality of education for pupils and young people with SEND:

1. in England, the number of statements/EHCPs naming autism as the primary need has increased by 55% between 2010 and 2017 to nearly 61,000. In addition, there are a further 13,000 statements/EHCPs where autism is listed as the secondary need.[4];[5] This is in the context of the total number of statements/EHCPs rising by ‘only’ 8% in the same period;

2. research carried out for the Department of Health projected a 32% increase, between 2010 and 2030, in the number of young people with a learning disability in England.[6], [7]

24. These trends are reflected in the DfE’s latest National Pupil Projections[8] which indicate a 24% increase in the number of 15 year olds (a proxy for future 16-19 SEND demand) in state special schools between 2016 and 2026.

25. Yet, despite the appalling employment figures, there is very little provision specifically aimed at closing the gap.

There are a number of reasons for this gap:

1. There is a pervasive lack of belief that disabled children and young people can actually work. At a conscious level, professionals say that they believe that is possible, but their actions belie their words;

2. Most parents of children with more significant SEND have been told by professionals, sometimes from before the child is born, that their child will never do anything, let alone work. This amounts to brainwashing even though it is honestly said and well-meant. This is most prevalent with young people with learning disabilities. As a result, disabled young people typically believe that work is simply not for them.

3. Despite almost every school and college claiming to provide preparation for work and independent living few build their entire curriculum around it. Offering significant amounts of work experience is rare, as is emphasising the development of effective self-advocacy skills;

4. This is partly because schools and colleges, both special and mainstream, hold to traditional delivery models – of curriculum, timetable patterns, teacher skills and experience – making committing to extended work experience very difficult;

5. Perhaps most critically senior school leaders do not believe that it is their job to prepare under 19 year olds for work. Unlike further education colleges and universities, which are at the end of the educational process, schools are in the middle and are not held accountable for the (un)employment rates amongst their pupils.

26. my AFK rejects all aspects of this negative thinking and behaviour. We have developed a radical new model, dubbed New School, for 16-19 education that can fit within the budgetary, curriculum and quality constraints of a special schools and still deliver outstanding education focused on the twin objectives of “Getting a job” and Getting a life”. New School would be for disabled young people with EHCPs covering learning disabilities, autism and/or communication/interaction difficulties who want to work. By establishing a new approach to 16-19 education for disabled young people, the New School model is responding to:

1. the need for more special school places, especially places suitable for students on the autistic spectrum;

2. students’ personal aspirations for their future;

3. the Government’s challenge to remove the barriers to employment for young people with SEND;

4. the growing demand from parents for more bespoke provision.

27. my AFK hopes to gain approval to open the first New School through the free school programme. More information on the New School model is available from www.my-afk.org

28. Employment support for 19-25 year olds: we are concerned about how support for 19-25 years is developing. Many more organisations are starting to offer support to get into work, yet it is increasingly apparent that the quality of much of what is being offered is poor.

29. Based on what we come across in our work, our concerns over quality include:

1. poorly trained and inexperienced staff. Job coaching does not simply involve filling in a few forms, taking the trainee to the place of work and then hovering over them, getting in the way of their experience;

2. inadequate choice of employers and job roles so that trainees do not get experience that matches their preferences;

3. poor preparation of the trainees ahead of their placement with inadequate job skills training. Training in soft skills is essential, not just “here’s how to write a CV”. Disabled young people rarely have anything to put on a CV;

4. poor quality placements resulting from the employers being ill-prepared by the job coach;

5. training periods that are too short, and inadequate amounts of face-to-face support. Disabled young people with EHCPs covering learning disabilities, autism and/or communication/interaction difficulties need significantly greater support from expert job coaches;

6. low rates of placement into paid work which is then sustained over a reasonable period of time.

30. We appreciate that in a time of tight budgets, commissioning ‘light touch’ job coaching is very tempting, however the long term budget savings are lost if the support is inadequate and jobs are either not gained or not sustained.

Recommendations: The following actions that need to be taken:

1. improve training of professional staff to create an environment where students really are at the centre of assessment and EHCP planning processes and where the negative effects of labelling and short term planning are minimised;

2. improve the allocation of resources by education, health and social care organisations to ensure that professionals can, and do, attend all the relevant EHCP/review meetings having previously met the child/young person concerned;

3. training of professionals (education, health and social care) should emphasise the reality of disabled people working in paid jobs;

4. all pupils and students with SEND should, throughout their education, be taught with a curriculum that has, as a central component, preparation for work and independent living. The assumption should be “when you get a job”;

5. make all schools and colleges significantly more accountable for preparing their pupils/students with SEND for work & independent living;

6. introduce new models of education for 16-19 year olds, such as New School, offering focused support.

June 2018

31. For more information, please contact:
32. Graham Duncan, Chief Executive, my AFK, 15a Tottenham Lane, London N8 9DJ
33. my AFK is a trading name of Action For Kids Charitable Trust, a charity registered in England & Wales, No. 1068841, & a company limited by guarantee, No. 3487626