Posts Tagged With: voice

Third person, twice removed


Where has the first person gone??  Why does it feel as though the person at the centre of SEN and disability has disappeared???

I occasionally feel annoyed if someone refers to my disabled son as ‘he’. Usually though if anyone does say ‘he’ in a conversation or letter/email, it’s because they are already using his name frequently so I know they don’t think of him as a thing and it would be excessive to use his name at every opportunity. There are other times, in conversation or in letters/emails, when Alfie’s name isn’t used. It wouldn’t usually upset me if I knew the person well enough to know it wasn’t intended in an offensive way. I would be upset, if I thought the person didn’t respect my son as a person and I didn’t know that person’s views or values of disabled people and that’s an easy situation to find yourself in. I suppose how it affects me depends a lot on how I’m feeing at the time too, and at the moment I’d be really upset if someone were to call my son ‘him’ or ‘he’.

The one that makes me angry though is when disabled people and children with SEND are referred to as ‘they’, and this subject has been done to death so I’m not going to explain why. If you don’t understand why, and you’re a chair of a governing board, just resign.

At the moment in SEND world I feel like some of ‘them’ are seen as a new phenomenomena*;like they’ve just popped up from somewhere, and no-one knows what to do with them but at other times, they are treated as though they’ve been around for centuries and the way they are treated hasn’t changed at all.

(See how awful it feels reading the last paragraph using they, them etc?)

I read an article tweeted by Jarlath O’Brien about 2 whistleblowers in Australia who’d exposed terrible treatment of disabled youngsters in schools, and the thing that stood out was way one of them had been told after they’d complained “My manager said all disability organisations, there is abuse. And if I can’t handle the abuse, maybe I need to consider my position in the disability industry.”

I could ask, “since when has there been a “disability industry”?” but the last 11 years of having to buy products and equipment for my son at ridiculous prices tells me: at least 11 years!! But not only products and equipment. It seems you can (and often have to) buy pretty much anything relating to SEN & D. My current educational outgoings for my youngest son, who doesn’t have SEND are for uniform, shoes and scented erasers yet Alfie needs a wheelchair, a ramp to get in and out of the house, home adaptations, a rise and fall bath and washbasin, changing bed, hoists, slings, special toilet that cleans the person, pull ups, special bed, orthoses (to keep his feet in correct position), wheelchair adapted vehicle, IT, support workers, [a school with staff who know how to teach and support kids with SEND], a solicitor who can represent my son when these things aren’t provided, and probably others I’ve missed out. All of these things cost money, and this is part of the industry. An industry which pays people a salary, and I’m not for one minute saying this is wrong or unscrupulous. Not at all. I’ve experienced unscrupulous companies and unscrupulous people within companies who could just as easily have been working on a job unrelated to disability, but I’ve experienced MDs of companies who seem to think disabled people should accept a poor standard of service without complaint. In fact I’ve experienced 2 examples of this very recently.

The experiences make me angry, because disabled people rely on these things and when the service is poor, have very few other options or companies they can go to. In other words, they often have no choice, and the company still profits without having to up their game for future sales. It’s like the cost of something is only ever important to the person or company/organisation selling or providing the service. What about the cost to the person on the receiving end? When did that start being irrelevant?  I’m increasingly feeling that LAs are considering themselves to be the victims of the SEND ‘reforms’ too, as if the children are somehow invisible.

Special Needs Jungle blogged recently about the botch up that is the SEND Reforms. And it really says everything it needs to. In particular, I agree with this “We need to put politics and self-interest aside once and for all for the sake of our children.”

Christine Lenehan of Council for Disabled Children also recently shared her views on the reforms, 2 years on. She talks about her early career, and how she’s watched and been part of the journeys of disabled children from long stay hospitals into the community, “However, I believe that journey is not yet complete”

I can’t help feeling, from an organisation funded so heavily by government, that this statement from Christine is absolute b#**#%*$. Whose journey is she talking about? It sounds like she is talking about her own journey. This should not be about her or the organisation, and this is not a journey. This is an absolute nightmare in which families are stuck. They are not meandering along in any meaningful direction. They have been stuck on the latest ‘journey’ for 2 years. What examples are there of any other children other than those with SEND, who don’t start a journey in the autumn term and finish it at the end of a summer term. Then they start a different journey in the next autumn term, and so on. Children with SEND have no beginning and no end because they are on someone else’s journey. Usually a LA officer’s, inexperienced TA’s, or teacher’s, the course of which can change several times, causing a diversion and serious delays for the child whilst the adult gets off the ride.

Ms Lenehan goes on to say. “Looking ahead…….just because the journey of the SEND reforms has been difficult and challenging, don’t forget why we’re are doing it……..we will always be pushing, testing and challenging government….” The article isn’t clear how CDC are doing that. When I push, test and challenge LAs, Ofsted and DfE, I don’t get a knighthood. I get pushed back, tested and challenged.

Finally, (sorry this has been so long) and I think on a more positive note, someone in a Facebook group I’m a member of posted a link which really struck a chord, and put into words very nicely what I believe we should be doing when it comes to research and advocacy and generally educating people about SEND.

“If there’s someone that can speak to a lived experience that you cannot, do not take up that space.” Amani Al-Khatahtbeh

The subject is about diversity in Hollywood, but it can be applied to all situations where we don’t listen to the ones who have the lived experience. We should be giving the first person the floor and be reminded that they are the ones who can provide the most useful feedback: authentic, and undiluted by the journey!

*is it phenomenom or phenomena? Is there a consultant for this (can I afford their fees???)

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PCFs: don’t believe the hype

The DfE published its final, definitely, positively, are you sure?, absolutely last one, “The Special Educational Needs and Disability Pathfinder Programme Evaluation: Final Impact Research Report July 2015” recently.

It claimed to have listened to over 600 families who have been involved in trialling the reforms, proposed (and implemented, before the final impact was known, clearly) as part of what eventually became the Children & Families Act 2014. It’s not clear though, how these families came to be the chosen ones. I’m sure it must have been cherry picking season in Wigan at the time though.

I’ve tweeted quite a bit about how Wigan Council actively prevented my involvement in the pathfinder work. The council, and some parent/carers in Wigan also actively prevented a Parent Carer Forum (PCF) being set up. (There is no PCF in Wigan, not even a very small one).

If you read the SEND Code of Practice, PCFs are mentioned repeatedly, as a way of obtaining views of parents and to ensure they are involved in decisions about services. There is even an organisation dedicated to all things PCF: The NNPCF (National Network of Parent Carer Forums), which is funded by central government. Contact a Family: also support PCFs, by administering a yearly grant to every PCF in England. The £15,000 grant, which is funded by the DfE, is to “strengthen parent carer forums, so that parents can participate in planning and making decisions about services in the area.”

I’ve stopped asking now, because it is virtually impossible to get information from Wigan Council, but a couple of years ago, when Contact a Family were also concerned about Wigan’s lack of PCF (even though they were still giving the council the grant money), I was told it was better it goes somewhere, instead of nowhere.

What I do know though, is that Wigan Council have a ‘Data Hub’, which is another title for a children’s disability register, and if you’re a member of the Data Hub (there is no membership scheme, and it is simply a list of families of disabled children in Wigan), you’re automatically a member of the PCF (which doesn’t exist, because it’s the Data Hub, which is essentially a children’s disability register, not a PCF, because it’s just a list of names!!).

Quite new on the scene, is Wigan’s Parent Participation Development Group, which is hosted by a charity called Embrace, and has a brand/logo of ‘Up’ which stands for Understanding Participation.

I think (but there’s nothing to confirm it) this is now Wigan’s PCF, but as the logo suggests, participation is still a difficult concept and I’m not sure when, and how, completion of the ‘understanding’ bit will conclude, and/or its success will be measured. A recent email from the Parent Participation Co-Ordinator, was a flyer about a local country show*, so I reckon the group must be at level one, module A of the journey to understand participation :

Module A- Understanding Participation – what I participated in this summer.

• In pairs, ask your partner what they participated in this summer. How did it make them feel? What did they learn from it? How would they do it better next time?

Example: This summer I participated in the country show. I got as far as the road, but then the wheelchair got stuck in the cow pats and had to be excavated by a tractor.

• Each pair will then feed back to the rest of the group on behalf of their partner.

• On completion of this module, learners can move on to Module B:

Module B – Understanding Participation: Have you really understood it?

• No one will pass this module, so just return to Module A, this time titled: ‘Understanding Participation: What I participated in this Christmas.’


Nick Peacey’s discussion paper ‘A transformation or an opportunity lost’, published for RISE (Research and Information on State Education) also mentions PCFs “Encouragingly, there are Parent Carer Forums in every local authority to support such collaborative development. But the Forums need LA staff to talk to and the latest information suggests that cuts may be making this less easy (NNPCF, 2015). But the model has potential: it could allow, for example, comparative study of provision, outcomes, admissions and exclusions of pupils with SEND across a group of LAs working with parents’ forums and, ideally, disabled student groups” and I think this illustrates the status PCFs seem to have when reports/papers/survey results are published about the SEND reforms. PCFs do not represent parents’ and disabled children/young peoples’ views. They may represent some of those views, but in my opinion, PCFs are being used by the DfE to weaken parents/children/young people’s views because unless you are a ‘member’ of one, your voice is not heard.

I recently asked for more information  from a Wigan councillor, who holds the portfolio for children and young people, about a project to improve the statutory assessment process, asking if parents had been involved. Her response was that she wasn’t sure, and some of the professionals involved have disabled children, but in any case I am always welcome to be involved in the Parent Participation Development Group (the set up I described earlier). Well thanks for that, but I already have a pretty good understanding of what participation should be, and it isn’t the Wigan way, that’s for sure. More importantly though, parents should not be expected to join a particular group just to have their voice heard. Yes, a PCF could be a good vehicle for obtaining views, but not being a member of a PCF (or any other set up claiming to be a PCF) should not exclude you from having your voice heard.

*The flyer advertising the country show was emailed out to parents who are on the ‘Data Hub’ mailing list. What it has to do with participation in the sense of collaboration and strategic input I do not know, but the great thing is, the accessibility at the show for disabled visitors is not even geared towards participation in the sense of simply attending a country show as the website describes: “Disabled Access – Please note that the show is held on grasslands.” I guess that means wheelchairs may get stuck in the muck. So, is this what the Parent Participation Co-Ordinator is being paid for? If so I’d love to know where the funding comes from for a role which seems to be more of an announcer of activities not everyone can participate in.

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