No to Public Health Policy, not decided by the Public

Public Health screening with the express intent to remove people with Down syndrome from the population is divisive and a disproportionate response to both actual potential quality of life and exaggerates health problems.

We are on the cusp of both non-invasive testing and the potential for testing for many other chromosomal and genetic disorders - there needs to be an open public debate about what these disorders really mean for those who have them.

Given that stereotypes and stigma often surround people with Down syndrome then this needs to be addressed not with imagery but by providing information to the public and expose people with DS as just being just as different and human as anyone else.

At no point should this be used to threaten a woman’s right to choose to have an abortion.

Comments on the Draft Special Educational Needs (SEN) Code of Practice: for 0-25 Years

A few comments follow on this new Draft - the full PDF version of the Code can be downloaded from the UK Department for Education at: https://www.education.gov.uk/consultations/downloadableDocs/Draft%20SEN%20Code%20of%20Practice.pdf

p. 9 - that 'Inclusive Schooling' (2001) will cease to have effect, this guidance more than any gave the clearest support to mainstream schooling of children with SEN (http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/eOrderingDownload/DfES-0774-2001.pdf) and the removal of the assertion from this new Code is unwelcome. This is not a given.

"In1993the general principle that children with special educational needs should – where this

is what parents wanted – normally be educated at mainstream schools was enshrined into law

However, pupils and their families had to satisfy a series of conditions – the mainstream’s ability

to ensure the child received the educational provision his or her learning difficulty called for while

also ensuring the efficient education of others with whom she or he would be educated and the

efficient use of resources – before they secured access to mainstream education. These

conditions were open to abuse and children who would have benefited from inclusion were

denied access to mainstream education."

p. 13 no issue with the drive to be more inclusive of the child in decisions, this also appears to be more reflective of general trends within healthcare and children's services.

p. 21 not clear how Local authorities are to provide 'arms length' independent advice and support to families making choices around SEN - to fund these, to contract them out is to be involved. Perhaps a national support arrangement would be more appropriate here.

p. 24 if Parent Carer Forums are going to be so central to this process then their structure and representation needs to be formalised e.g. their legal status, minimum representation numbers etc. It's unclear that this would entail; "the contribution of parents is recognised, for example, through public recognition, reward and remuneration;" the latter being especially problematic if independence, and orientation/ objectives is to be preserved.

p. 36 there should be a more nuanced approach to data collection here, local registers are not well defined and, national statistics about specific conditions would enable more planned support - there are no statistics for example on the number of children with DS in education. This almost feels like an afterthought within section 4.3.

p. 55 the code exposes a sorry state of affairs where it needs to define that 'The local authority must also ensure that all its officers co-operate with each other in respect of the local offer.'

p. 62/ all of 6.3 ASD gets called out here but the most common syndrome - DS has no mention in the entire code, there are generalised comments on LD/physical needs etc. If there is a desire to address specific needs - which is not undesirable as long as within the context of mainstream differentiation of work, then this needs a more consistent and planned approach to deliver any efficacy.

p. 81 Specific 'impairment' information doesn't include any support for Down syndrome

6.8 p. 86 states that '...the majority of children and young people are already successfully included in mainstream education', this inclusion is far more patchy than the statement suggests, and also requires much more work on the part of parents and professionals than is implied. Also this statement appears (need data to support) to become less true later in the child's school career as they reach secondary education. The assertion here that 'Special schools... have an important role in providing for children and young people with SEN...' is a volte face the opposite of the message promoted in 'Inclusive Schooling'. This softening of expectations and changing of language is sophistic at best.

Inevitably this leads to 7.11 (p.110) where the LA is given two get out clauses:

If a parent or young person makes a request for a particular nursery, school or post

- 16 institution in these groups the local authority must comply with that preference

and name the school or college on the EHC plan unless it would:

a.

Be unsuitable for the age, ability, aptitude or SEN of the child or young

person; or

b.

The attendance of the child or young person there would be incompatible with

the efficient education of others,or the efficient use of resource

These make a mockery of the lip service paid to consultation, involvement and co-working - and indeed that 'parents know their children best'. Additionally the parent is not mentioned in this process, rather the school:

The local authority must consult the governing body, principal or proprietor of

the school or college concerned and consider their comments very carefully before

deciding whether to name them on the child or young person’s Education, Health

and Care Plan, sending them a copy of the draft Plan. If another local authority

maintains the school, they too should be consulted.

the code also refers to 'unreasonable public expenditure' how is this to be defined? These get out clauses are more than concerning.

Why we need a Down syndrome liberation movement

Is that a single palmar
crease?

For too long people with Down syndrome have been excluded – for too long people with DS have fallen through the gaps in society. Exclusion in many forms has brutalised and dehumanised, stigma has marked out and placed people with DS in the position of 'burdens'.

Disabled activist Sunny Taylor has written that 'disability is a political issue not a personal one'. There are many active disabled rights groups and some important victories have been won - although there is much more progress to be made. However learning disability – with DS being the largest constituent, has been largely sidelined from these campaigns, unintentional though that is. Disability activism is often atomised by individual conditions and necessary battles.

We're in a position now whereby the specific political interventions needed by people with Down syndrome are not being addressed. The likely roll out of an early stage blood test in screening for example.

Now you could argue that I don't have Down syndrome so therefore my views are invalid – that's a fair point, it also isn't very realistic. The political demands I would make are ones that I make as a human being, standing next to an equal who is facing prejudice and ignorance.

If you look at the meaning of charity you get the following words as definition; alms - mercy - beneficence - benevolence – philanthropy. Ever since Dr Down identified what he saw as a racially degenerate condition in his Asylum for Idiots too much has been left to this handing down of help. Charity is about handing down, it seems as very Victorian an institution as Dr Down himself.

Some very beneficial work has come from charities in the last few decades – I won't deny it – that's not to say more political progress hasn't also been sidelined by this as the principle approach to furthering the causes of people with DS.

What charity doesn't do is challenge. It has a vested interest in the status quo, they cannot by definition challenge politically, they cannot alienate their generous donors by poking at authority and riling people with uncomfortable truths.

Liberation movements have a strong tradition of taking action for outsiders who 'don't count' whether due to sex, race or ability – often excluded from the labour market and seen as worthless. In a week when the British Chancellor of the Exchequer asserts the new budget is designed to benefit "those who want to get on and work hard" and the Prime Minister repeats endlessly "hard-working families" – many with Down syndrome would be fair to comment, 'chance would be a fine thing'.

Low expectations in society as a whole and a new record low belief in people's ability to achieve anything should not hold us back.

We need a movement that understands the political history and political position of those with Down syndrome and is able to advocate and challenge – as stridently as necessary. It needs to be built on a common set of beliefs and fight for them no matter what. It also needs to take shape in a very particular form – not for me to define, however I think it should be said that working together, people with and without Down syndrome. Attitudinally a good example is the Gay Lesbian and Bisexual group Stonewall - with no issues with causing offence if necessary and effective interventions they have made a huge impact.

I imagine rock climbers picking their way up a difficult peak, linked together, helping each other progress to their ultimate goal.  

The Education Select Committee is conducting pre-legislative scrutiny of the Government’s proposed reform of provision for children and young people with Special Educational Needs (SEN). These on the most part constitute a number of questions based upon a letter written by the outgoing Minister Sarah Teather. You can download a copy of the draft legislation.

My comments are outlined below, if you wish to add your comments to the committee that can be done before the 11 Oct '12 to educom@parliament.uk and marked “Pre-Legislative Scrutiny: SEN”.

1. This submission will address some specific areas of concern for children with Down syndrome (DS) to enable their successful access to education. Down syndrome is the most common form of learning disability in the UK (there are about 840 babies born with Down syndrome each year with about 35,000 people with DS living in the UK today (http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2010.00593.x/abstract)).  

2. DSA figures also reveal that 97% of pre-school families expected their child to go into mainstream, yet in 1988 when they carried out a survey of parents with children who have DS about 87% of children with DS educated in mainstream primary only 23% transfered to mainstream secondary. Many children who do go to mainstream schools are held back in the reception year when their peers move up to year one.

3. Children with DS have only very recently been able to access formal education with changes introduced by Section 10 of the Education Act 1976.

4. The Committee invites written submissions of evidence addressing the following points:

Does the draft Bill meet the Government’s policy objective to improve provision for disabled children and children with special educational needs?

5. There is little in the Bill that demonstrates an improved provision. The idea of the personal budget is one which has the language of delegated control, however it is one with is necessarily limited (both financially and in access to services) and is a needless refocusing of support services on administration of budgets rather than excellence in support. Many parents will welcome the idea of more control – however they would welcome more the promise of dedicated and appropriate support for their children, something this Bill fails to define or deliver.

6. Personal Budgets are illusory in painting a picture of control where parents in reality will have little choice over available speech therapy, occupational therapy or specialist teachers – spend is anticipated to be manipulated downwards and quality, and availability of service put down to personal choice. Local offers have little or no quality control or high bar in place (e.g. following best practice from national professional bodies such as the Royal College of Speech Therapists on early intervention with children with DS).

7. This Bill lacks a vision of inclusion and excellence for our young people with Down syndrome and is likely to be a backwards step in a system already failing them. The aim should not be of ‘integrated support’ rather for integrated and successful children.

What impact will the draft Bill have on current institutional structures?

8. There is a significant danger that this Bill will prove a negative force against inclusion in mainstream schools for pupils with SEN. Given the only very recent opportunities for inclusion of children with DS within the current system clauses such as 19 (4a & 4b) give schools the potentially avoid addressing inclusion of those with Down syndrome based upon such undetailed and unmeasured sub clauses as ‘(i) the provision of efficient education for others, or (ii) the efficient use of resources.’

9. The term ‘efficient’ should be removed for a higher bar. For a school to prove, beyond all doubt, that it is not in the interests of the child to attend despite their parent’s wishes. Efficiency speaks to the concepts of productivity and cost control, however children’s inclusion produces effects greater than the investment required – social inclusion, understanding of other’s needs, friendships, behaviour modelling and higher educational achievement.

10. The concept of mediation rather than offering a chance for early resolution of issues could actually act as a further barrier to parents and children achieving the outcomes they need in a timely manner. Children with SEN need swift action and often the recourse to Tribunal is an effective and legal way to resolve disputes.

Is there anything missing from the draft Bill?

11. The Bill does not lay out a framework for measurement of success which given the aim stated in the Foreword of addressing the fact that the current system is ‘failing to address their [children with SEN] true needs’. The Bill fails to make any attempt to identify what these ‘true needs’ are, or to require any demonstrable outcomes from the legislation at all.

12. Only as recently as 2006, in the then Labour government response to a House of Commons Select Committee Report on Special Educational Needs in the same year, was SEN training proposed as a core component to teacher training and the recognition that school SEN co-ordinators should be qualified teachers. Without the key skills and understanding, of special needs whether specific for children with a diagnosis as with Down syndrome and non-specific for many other children, whose special needs can be economically or learning bias in origin, then it is not a surprise that many teachers feel that children with SEN should not be included.

13. This Bill offers no legal framework to support the proposed ‘integrated support’ with the Health and Care elements of the EHC unsupported by the opportunities to challenge available within the Education provision. Health and Care should also be subject to legal responsibility and consequently legal challenge by parents.

How the general duties on local authorities to identify and have responsibility for children and young people in their area who have or may have special educational needs (clauses 3 and 4) work with the specific duties in other provisions (clauses 5 to 11, 16 and 17 to 24)?  Are they sufficiently coherent?

14. The requirements set out under clause 11 fails to define any level of adequate provision of services for those children identified with SEN, it also fails to take a sufficiently national view on how these services could be shared, improved or reach a significant levels of excellence.
15. Brahm Norwich, Professor of Educational Psychology and SEN at the University of Exeter points to a parting of policy and statements from the Labour government where in 2006 Lord Adonis, the Parliamentary Under Secretary, told the select committee that ‘the government did not have a policy of inclusion that resulted in closing special schools’ in direct contradiction to the ‘Removing Barriers to Achievement’ strategy from 2004 (Warnock, 2010: 51). Warnock has been quoted (Quarmby 2006) as saying:
“I find it interesting, the subterranean way in which Labour is coming round to special schools.”

16. Baroness Warnock described things as getting:
"far worse from 1988 onwards [...] (for children with SEN)[...] who [...] were not going to help the league tables”
(Select Committee on Education and Skills Third Report 2006)

17. We find ourselves with a broad consensus towards some form of segregation in schools from the politicians and teachers unions, and for reasons which appear to come down to the failure to integrate properly. Not addressing training, not providing resources appropriately and using knowledge about particular conditions strengths and weaknesses. If the use of the term ‘ideological’ was meant in a pejorative way to refer to inclusion then that criticism stands if it is to describe a great deal of experience by pupils with Down syndrome as being more ideological than practical.

Do the provisions achieve the aim of integrated planning and assessment across agencies?

18. Local Education Authorities (LEAs) are in an untenable position where they act as both the provider and funder of services which they are also tasked with constraining. As a result LEAs often allow statements to reflect what they can afford rather than what the child actually requires. A common issue for children with Down syndrome is the provision of speech therapy, which is both expensive and important, consequently resulting in frequent tribunals (also chaired by LEAs) where parents attempt to extract the correct level of support. The statementing process itself is also byzantine and complex, so is likely to expose a bias towards educated middle class parents willing to fight. That this system needs reform is not in question, the strengths of the system that should be retained (and developed) should include:
18.1. The legal requirement for a state funded school to accept a child with SEN if their parents request it.
18.2. Currently LEAs allocate the funds that are spent to appropriate professionals, recognised speech therapists etc. making these funds freely available to spend by the schools on whatever support they deem necessary could undermine consistency in professional support and understanding – which needs bolstering not undermining
18.3. A collective and positive strategy for inclusion
18.4. Compulsory training and experience for teachers in SEN

19. Not everything is perfect in mainstream, this is clear, yet a move away from inclusion would be a retrograde step. There are many good teachers in mainstream schools who given the right support are able to take simple steps to achieve great inclusion to the benefit of all pupils and to the great advantage of the child with DS. As the Lamb Inquiry asserted one of the biggest issues facing the current system is that it is ‘designed around the presumption of failure’.

Second Edition

I'm very pleased to say that 'The Politics of Down Syndrome' has been selling well enough to warrant a second edition in 2012. This is where I need your help. Firstly, I'm very aware that the first edition has a number of proofing & editorial errors - mostly my own, secondly there is an opportunity to include a couple more chapters.

If there are errors you've spotted I'd really appreciate it if you let me know what page they're on and what they are so I can submit them for correction - thank you!

In terms of extra content, I was thinking of a chapter on the search for 'cures' and the ethics of medical solutions to Down syndrome, with possibly something on learning disability activism/activists. However I'd be very interested in your ideas on what you'd like to see. Again, thank you, and thank you all for your support in 2011.

Pathfinders

The Government Green Paper on SEN was due to become a White Paper this month (sept '11) post consultation. They have however decided to proceed with 'Pathfinder' trials instead, I'd be particularly interested if you experience any of these in your area.

Notes on the Green Paper: Support and aspiration: A new approach to special educational needs and disability

I’ve gone through the whole Green Paper tonight (http://www.official-documents.gov.uk/document/cm80/8027/8027.pdf ) and have the following comments (by section):

1.0 Foreword (p.2-3)

1.1 The paper begins by establishing as given that the current system is inadequate and unwieldy, costly and unsustainable – with the desired outcome to be ‘less stressful for families and less costly to run’. This then immediately jumps into the idea of giving parents more control via a personal budget and introducing the idea of a budget, immediately limiting – what happens for example if the child in question needs more support than the ‘budget’ will pay for?

1.2 After the budget idea they go straight into Free Schools – which will ‘make it less likely that existing special schools will close’ they also mention ‘special free schools’ implicitly not supporting inclusion as the primary route but encouraging it further through the defence of the current special school system and new semi-autonomous special free schools. Nb. it’s highly unlikely any (non special) free school would want children with SEN as an additional cost. It isn’t clear in the least how or why new Free Schools would stop existing special schools from closing the correlation appears spurious at best.

1.3 This paper also points out that state schools can be named in a plan as a ‘preference’ not as a fundamental right.

1.4 Lots of repetition of Teachers being ‘free to decide what happens in their classrooms’. Currently the NUT and the Head Teachers Association have actively campaigned against the right of parents to name the school of their choice for their child and have supported segregation as a policy, under the guise of ‘making sure every child is able to benefit from learning’ euphemistically blaming the child who needs extra support for disruption and ‘too many adults in the classroom’. This innuendo is repeated almost word for word here yet not specifically defined.

2.0 Executive Summary (p.4-13)

2.1 Point 7 reiterates the manifesto and coalition agreement that ‘We will end the bias towards inclusion’ by offering more choice and by ‘changing statutory guidance for local authorities’ this latter phrase is unclear in the extreme and concerning.

2.2 Removal of a parents right to choose a mainstream school is outlined in point 7; “Parents of children with statements of SEN [inconsistency here as said would be abolished] will be able to express a preference for any state-funded school – including special schools, Academies and Free Schools – and have their preference met unless it would not meet the needs of the child, be incompatible with the efficient education of other children, or be an inefficient use of resources.” This is an outright attack on both parental choice and inclusion wrapped up under the sub heading of ‘give parents a real choice of school’ Orwell would be proud. This could be in breach of European Human Rights legislation and/or UN Charter on Disability.

2.3 Point 14 looks to local voluntary and community sector groups could coordinate the assessment’ [of needs]

2.4 Point 17 reasserts a vision of clear information ‘about the funding available’ to support the child, and changes the terms of the discussion away from providing services that should meet the needs of the child as they develop, to one where the LEA just makes a ‘local offer ...[of] what support is available and from whom;’ limiting by definition. Personal funding is not a way to deliver better services it’s a way to cut costs.

2.5 Point 20 states ‘Disabled children and children with SEN are more likely to be bullied or excluded than their peers’ – is this true (esp. the disabled part)? It’s just a preamble to this ‘...they tell us that they want to be educated by people who understand their impairments, without fear of being stigmatised by their peers...’ now that would be a great vision for mainstream state schools but I suspect that isn’t what they’re getting at.

3.0 Introduction (p. 14- 27)

3.1 Point 42 – interesting data on the fact that the number of children attending special schools has risen by 4% of statemented children between 2006-2010 (despite the bias obviously) the only referenced information here is the data for 2006.

3.2 There are a number of breakdowns of data here – yet no breakdown of the actual diagnosis of most children with SEN.

3.3 Points 52 – 57 much of this data is evidence that the majority of ‘other’ SEN labelling of children in education is down to poverty – this Green Paper however doesn’t actually address child poverty in any way, rather it makes a spurious inference between SEN and crime etc and concludes that if the SEN label is removed then so is the stigmatising effects that lead to under achievement, crime etc. without addressing the fundamental issues.

4.0 Early Identification and assessment (p. 28-40)

4.1 Much of this section is unclear on solid actions that will happen, much is deferred to the ‘pathfinders’ who will work with groups/professionals and LEAs from September. There should be strong and co-ordinated action at this point to define the range of needs of children with DS and the practical levels of support needed, this could prove invaluable when contesting the LEA’s offer and the budgetary constraints laid down at some point in this process.

5.0 Giving Parents Control (p.41-56)

5.1 Point 2.20 (p.46) worries me not sure in terms of an LEA offer what they would mean in ‘...different provision schools make for children with SEN...covers four key areas: curriculum [including tailoring] teaching...assessment...pastoral support...’ It could be significant that these are defined on a school level? 2.22 goes on with more of this including the ‘school’s approach to SEN’.

5.2 Greater cut backs in speech therapy support – 2.50 whereby children at mainstream no longer get ‘expensive individual placements in individual provision [but access it] where therapy support is provided by the school in-house. Many children attend a special school on a day or part-time basis to access therapy...’

6.0 Learning and Achieving (p.57-79)

6.1 Positive noises about greater inclusion of SEN training for teachers – but no detail about what this would comprise of. Would be good to see a teacher training qualification and how this would be broken out, whether compulsory and what the constituent elements are.

6.2 Statement as to how essential Special Schools are in 3.61

7.0 Services working together for families (p.93-113)

7.1 Massive amount of change both in this Green Paper and across the NHS at the same time makes this section a tad optimistic, whereby professionals, newly empowered by local budgets and greater autonomy will all work together to create a new and innovative future. So new ‘Health and Wellbeing Boards’, new GP Consortia, new involvement of voluntary and community organisations and local commissioners... could be an unholy mess.

7.2 More reliance on specific specialist advice from organisations for ‘specific impairments’ mentions here Dyslexia and Autism Trusts but nothing for Down syndrome, this should be an area staked out asap (ref. 5.32, 5.33 p. 101)

7.3 Also of pragmatic interest is 5.34 that the Government is supporting the National Year of Communication in 2011 – so could be good to drop into all those Tribunals on lack of speech therapy support.

7.4 Speech Therapy is under review through the Liberating the NHS initiative (ref. 5.40-5.43)

7.5 Case Study example of ‘Ups and Downs’ accessing more educational psychology (5.47) – so again using charities to act as intermediaries rather than the state identify and address the need. ... leading to 5.55 onwards on the Big Society & Big Society Bank etc

I hope my comments might be useful in drawing out some of the direction of the coalition and the likely roadmap for children with Down syndrome in the UK education system over the next few years.