Tuesday, 8 October 2013

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:

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

Friday, 22 March 2013

Why we need a Down syndrome liberation movement

Is that a single palmar
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.