This is a fail post – a post where I talk about something that didn’t go well. I think the site should reflect a full version of me rather than an edited one so I make an effort to put up a posts that show when things go wrong. If you’d like more information on my reasoning, feel free to read this post.
I’m putting up this post to supply some of the supporting information. The information on how expensive AAC devices get comes from the Domesday Dataset, as does the “9,000 who do” part. The 32,000 people in the UK who would be helped by AAC comes from this report (and a small piece of maths via the size of the UK population). The transcipt for the talk is here for the talk is here in case anyone is interested.
I really think this might be the summer that really puts the White Water Writers project on the map.
So I’ve been ‘incubating a new project. It’s existed within eQuality Time as a concept for a while and over the last few months I’ve been making connections around it and putting things into place. It’s time at this stage to put the ‘broad brushstrokes’ out there. The intent of this article is to describe a problem space and present the strong case for a particular program that will relieve some of the pressure.
Language barriers remain a major obstacle in UK healthcare , child protection , and involvement in local issues . We developed this project in response to not only the academic research but also from the written and verbal feedback from teachers and students that we have previously worked with on literacy issues.
 JACOBS, E., CHEN, A. H., KARLINER, L. S., AGGER-GUPTA, N. and MUTHA, S. (2006), The Need for More Research on Language Barriers in Health Care: A Proposed Research Agenda. Milbank Quarterly, 84: 111–133. doi: 10.1111/j.1468-0009.2006.00440.x
 Kriz, Katrin, and Marit Skivenes. “Lost in translation: How child welfare workers in Norway and England experience language difficulties when working with minority ethnic families.” British Journal of Social Work 40.5 (2010): 1353-1367.
 Livingstone, Andrew G., et al. “The language barrier? Context, identity, and support for political goals in minority ethnolinguistic groups.” British Journal of Social Psychology 50.4 (2011): 747-768.
I post occasionally on Sibling Issues, partly because, as we’ve noted before, there are relatively few other people doing it. A few of the guest writers on this blog are siblings themselves and we’ve talked a few times about them being a ‘hidden’ population.
In October, I set out to find out how big this hidden population was. When you can put numbers around something, you can start to understand it a little more. It can inform research direction within academia, and funding decisions outside it. It can focus minds and help people make tough decisions.
Traditional research, of course, would be to send out some surveys and try and extrapolate from results. I’ve used this style before on papers, but it’s frustrating when you know the data is already there. It’s particularly annoying when you know that much more accurate data already exists.
In this case, almost all parents of children in the UK are in receipt of Child Benefit. Also almost all parents of children with disabilities in the UK are in receipt of Disability Living Allowance (DLA).
If you had two lists, one containing all the households that contained all the households that received Disability Living Allowance for someone under 16, and one containing the amount of Child Benefit claimed by each household, then we could count up the number of siblings. You’d only count the cases where both the ‘glass‘ and the DLA sibling were under 16, but you’d get better data than ever before.
What’s great is that we can do this.
If you worked for the Department of Work and Pensions (DWP), and had these datasets handy, then it would take you about 15 minutes to interrogate the system to get the numbers out.
In October last year, I made a Freedom of Information Request asking for
“the number of people receiving Disability Living Allowance on behalf of an under-16 year
old. I would like this information broken down by the overall amount of Child Benefit claimed by the person.”
This is the sort of the thing that the Freedom of Information Act is particularly useful for. There is no political point scoring happening here. The DWP know that this isn’t information that people are going to shout at them over, this is information that the government can release to the public to help make the world better.
This Friday, they came back to me; Here are the figures.
|Number of Children per Household||Frequency||Total Number of Siblings|
That’s 495,250 in total. As a minimum number of the siblings (under 16) of children (also under 16) with disabilities. I haven’t worked out how to extrapolate this to the siblings under 18, or adults. But I think that’s a very, very big number considering the tiny amount of attention paid to it.
Note – lots of caveats can be put in here, but I wanted to put these numbers out. This is clearly only one datapoint, but the DWP figures are as solid as one can imagine. For those interested, you can compare with the Office for National Statistics numbers here (there will be a couple of follow up (and very nerdy)) posts on the statistical differences.