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As all that is solid melts to air and everything holy is profaned...

Monday, March 03, 2014

Disablity -you gotta fight for your rights

Callum Livingston- wearing his Radical Independence t-shirt

When the Personal is Political,.
When I started writing this blog  back in 2005, work was just about to start on building the flat you can see behind Callum in the photo above. It was built specially for Callum by the Loreburn Housing Association. We moved in in August 2006.Before then, since moving back to Scotland from London in 1997 we had been living in a private rent flat converted from a Victorian house and split by stairs over three levels. Which was fine when Callum was small (aged 6 in 1997) but as he got older it wasn't. So from 2000 to 2005 I had to get involved in an incredibly complicated process to get something more suitable for Callum as he got older and became (as he now is) an adult.

Because it happened before I started this blog,  I didn't document the process and I am not going to do so now- apart from saying that it required making the local council change their disabled housing policy from 'built new houses and then convert them for disabled use' to ' build a new house specially designed for a disabled person'. Which was fucking hard to do. I never got to the point of having to make a formal complaint though.But now I have made one - you can read it below. Its midnight and I have just finished it. Tomorrow when I read through again before sending it off, I may decide to make a few changes. 

If I have done my job and written it properly it should be clear what it is about. If it is not clear, that is bad because it means I have left the Social Services Department room to wriggle out of actually doing something. 

Seam McGleenhan
Interim Chief Social Work Officer
30 Edinburgh Road

1 March 2014

Formal Complaint of Unlawful Discrimination Against a Disabled Person [Equality Act 2010]

Dear Mr. McGeehan ,
                                      We, Callum and Alistair Livingston,  would like you to respond to us in writing within 28 days of receipt of this letter with a view to resolving this complaint. The Background and Current  situation which have led to the complaint are set out in parts 1 and 2 below. The Formal Complaint is contained in part 3.

1.1 Until he was ten, Callum wore incontinence pads 24 hours a day. At that time he was a weekly boarder at the Royal Blind School. Staff at the school believed That Callum could become continent and over the next two years major step was achieved at the school, at home and during the 2 ½ hour taxi journey between home and school. The importance of this step for Callum can be illustrated to his reaction when he had to wear pads again for weekend respite breaks at Netherlea in Dumfries. ‘I am not a baby, I don’t wear pads anymore’.  Since it was therefore clearly humiliating for Callum to wear pads and since it was unreasonable to expect NHS Dumfries and Galloway to make exceptional provision to meet Callum’s toileting needs, Alistair agreed that Callum’s respite breaks at Netherlea would cease. [As a consequence, Callum also ceased to be  defined as a ‘Looked After Child’]

1.2 Even before  the Royal Blind School began to reduce Callum’s dependence on incontinence pads , it was clear that the ’temporary’ private rent accommodation - a flat in a Victorian house spread over three floors- where Callum and Alistair were living would not meet his long term needs. This now took on fresh urgency but as an interim measure Dumfries and Galloway Council provided  a commode chair and hoist and two stair lifts in the flat. A £20 000 improvement grant was then arranged to construct a shower room  plus tracked hoist. This required major building works which were completed in 2003. In parallel with this, Alistair persuaded  Dumfries and Galloway Council to make a policy change on the provision of housing for the disabled. The policy had been to build and then convert for disabled use but it was accepted that to meet Callum’s long term needs a custom built flat should be provided. This was achieved  in 2006 via  Loreburn Housing Association’s Merrick Road development. With Callum still having three years at the Royal Blind School, Alistair was then able to re-focus his energies and after writing a 50 000 word dissertation was awarded the degree ’Master of Philosophy ’ by Glasgow University, Dumfries Campus in June 2009.

2.Current situation
2.1 Since December 2009, Callum has attended the Castle Douglas Activity and Resource Centre (ARC) for three days a week, with the support of a Spectrum/ILS care worker. For the first year there were no toileting problems. In an Occupational Therapy Functional Assessment Report dated 27 February 2011, OT Ailsa Craig noted under the heading Continence that ‘Callum is fully continent. He will request the use of a bottle for urination and is fully aware of impending bowel movements…Callum does have occasional accidents but these are rare.’

2.2 However on 21 February 2011, Callum had to return home for a bowel movement. This happened again on 24 February. On 7 September Callum was wet with urine when he returned home. In 2012 there were urine wetting incidents requiring a return home on 2 February, 4 June and 27 June. On 19  December Callum had to return home for a bowel movement. During 2013 there were nine toileting incidents. The most serious occurred on 3 January when Callum had a bowel movement at 11 am at the ARC but Alistair was out shopping so Callum  was not able to return home to be changed until 12.30.pm. The most recent incident was a urine wetting one which occurred on 29 January 2014, requiring an early return home.

2.3 It should be noted that the frequency of these incidents appears to be increasing -
2010 :- 0
2012 :- 3
2012 :- 4
2013 :- 9.

2.4 From 2001 to 2009 at the  Royal Blind School and since 2006 at home, Callum’s ability to be continent has been supported by access to a toilet within minutes of Callum becoming aware of an impending bowel movement. Equally, a soiling or wetting incident at the Royal Blind School in the past or at home since 2006  can be dealt with immediately and with minimal disruption to his daily routine.  However, the absence of appropriate toileting and changing arrangements Castle Douglas ARC means that this pattern of immediate positive feedback supporting Callum’s efforts to remain continent is disrupted by the need for Callum to return home via a taxi.

3. The Formal Complaint
3.1 While compiling the list of toileting incidents (2.3 above), Alistair noticed that in April 2013, efforts were made at Castle Douglas ARC to find a solution to the toileting problem. These involved trying different slings on the ARC hoist but according  a note made by Callum’s Spectrum/ILS  support worker, progress was halted due to  (unspecified) ‘resistance from Social Services’. Certainly, there are no reports of further attempts being made in 2013.

3.2 Alistair then  researched the topic ‘toileting provision for the disabled’ which led him to the Equality Act (2010).  As with all Acts of Parliament, the Equality Act is difficult for  someone  without speicalist knowledge to interpret. Alistair therefore contacted  the Equality Advisory Support Service. This  is an advice service aimed at individuals who need expert information, advice and support on discrimination and human rights issues and the applicable law, particularly when this is more than advice agencies and other local organisations can provide. In the course of a 50 minute phone call, Alistair was advised that the failure  to provide appropriate toileting facilities for Callum at Castle Douglas ARC would fall within the scope of the Act as form of discrimination against a disabled person. The relevant section of the Act would be Part 149 Public Sector Equality Duty.

3.3  However, it was also explained to Alistair that before proceeding further, Dumfries and Galloway Council Social Services Department must be made formally aware of the situation and given the opportunity to make reasonable adjustments to overcome the problem- or explain why it is not possible to make such adjustments. Therefore on behalf of Callum [see below concerning Power of Attorney]  please  note the following.

The Equality Act 2010 (the Act) states that I, Callum Livingston, am protected against unlawful discrimination by you as a service provider because of my disability.  Under the Act, as a service provider, not only do you have a duty to make reasonable adjustments for an individual who is at a substantial disadvantage due to their disability, you also have to take positive steps to ensure that you anticipate the needs of potential disabled service users  before they access your service.

You may have to consider one or more of the following:
1. A change to a provision, criterion or practice .
2. A change to a physical feature, and/or providing an auxiliary aid.

If it is reasonable for the service provider to make an adjustment then it must be made. A failure to comply with this duty could be unlawful under the Act. The adjustments which I consider that you have failed to make are  providing appropriate toileting and changing facilities at Castle Douglas Activity and Resource Centre so that I do not have to return home if I need a bowel movement or if I  require a change of clothes following a wetting or soiling incident.

We, Callum and Alistair Livingston  would like you to respond to us in writing within 28 days of receipt of this letter with a view to resolving this complaint. In your response we would like you to explain why you failed to make the reasonable adjustments in the first place.

Note- an application for Alistair Livingston to have Continuing and Welfare Power of Attorney on behalf of Callum Livingston dated from 28 February 2014 has been lodged with the Office of the Public Guardian.

Yours sincerely
Callum and Alistair Livingston


Anonymous Anonymous said...

Good luck with this Alistair and Callum, having been in the thick of it, as it were, I am well aware of how hard everyone, but mostly Callum, worked to get to the point he has with regards to toileting. It is so saddening to see the issues highlighted in this piece, particularly the amount of 'incidents'. It seems so obvious that this is down, not to a deterioration of Callum's capabilities, but to the environment he now finds himself in. I can well imagine how stressful he finds this situation. It really seems a no brainer, he needs (as we all do) access to a toilet daily, give him a toilet. Yet again basic rights for those with disabilities comes down to who can shout longest and loudest, Callum you are lucky to have your dad to do that for you, but you shouldn't have to be lucky, they should just be saying fair do's here's your toilet. It's a bloody toilet, not some luxury item made from gold. What a ridiculous situation, I hope your letter facilitates this basic amenity promptly and returns Callum the dignity to which we are ALL entitled. Once again, the very best of luck. -Zoë Williamson

5:53 am  

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