Tuesday, 4 September 2012
Silk Road Hares by Jan Wheeler
from beamers designs
I have been busy these last few ... YEARS ! ... filling out forms, answering assessments, fulfilling audit conditions, having my deepest fears and most personal needs investigated, written out, typed up, form filled, signed, counter-signed, copied to everyone, and one copy sent to me ... so that I could send it to the next agency that required it of me ... you know what I mean - you too if you are disabled and a benefit claimant.
Here is a tally in more or less date order, beginning in 1998 -
Incapacity Benefit ~ Income Support ~ Council Tax Benefit ~ Disability Living Allowance Care ~ Disability Living Allowance Mobility (BOTH AWARDED "FOR LIFE" in 1998) - Motability - Motability OT Assessment ~ Motability Grant financial assessment ~ Social Services (aka 'Adult Services' until they realised the connotations !) Care Assessment ~ Social Services OT assessment - Social Services Social Inclusion Assessment ~ Social Services Direct Payments Assessment ~ Direct Payments Audit ~ Social Services Adaptations Assessment ~ District Council Adaptations Grant Assessment ~ District Council Housing Benefit ~ Specialist Registered Social Landlord Care and Support social care assessment ~ ditto, financial assessment ~ NHS Wheelchair Service OT assessment ~ NHS PCT Personal Health Budget social care assessment ~ NHS PCT PHB financial assessment ~ NHSPCTPHB financial audit ~ Social Services Direct Payments Assessment of Disability Related Expenditure for 'Fairer Charging' (sic) assessment of my contribution (from my DLA care) to the costs of Social Services providing my care (yes, really !) (which they unlawfully deduct from my Direct Payments budget that I use to pay for my care !!) (another LGO investigaiton ?) ... and again - Disability Living Allowance ...? Again ? Yes my right to Disability Living Allowance is being reviewed, because the rules have changed. 'For Life' no longer means For Life.
I am fortunate that so far these many and various agencies have supported me, based on their assessments of my needs, yet ...
Think of the money all those departments would save if I were empowered to have ONE assessment, applicable to all.
Think of the fear, stress, shaky tiredness I would be saved if I did not have to keep doing this.
Thinking at 2 am in the dark ... what if I am deemed capable of work ... on the basis of my being capable of filling out the forms !!!
I am too ill to work.
It has taken all my available capability, after sleep, food, personal care, dog exercising (essential social inclusion and in place of a fire alarm - my current argument with social services 'fairer charging' (sic) financial assessment of disability related expenditure), yes, it has taken all my capability, to complete the DLA form. A form of 57 questions, 21 of which I had to type out, filling one sheet each, to adequately describe my situation.
And that is being replaced next year by PIP assessments. Will they even ask the questions that are relevant to my needs?
Its a lot of money - public money - spent on keeping my head above water, yet the tides and floods that threaten to pull me under are of their making. Prior to the welfare reforms of this Coalition Government, I felt confident in my right to this amount of support but now, to save money, they decided to question my right to support and social inclusion.
So now my confidence in the fairness of the system that supports me, that supports all dis-abled people, has gone; all is shaky.
I am sure I am not alone. In all this form filling. In all this worry about the future.
What can we do. I think at times even my social worker despairs. Maybe even my independent support worker despairs. And I am sure even my specialist RSL despairs of never again being able to support someone such as me into independent living.
There is one light being held aloft in the middle of this dark tunnel as I tramp my way through it ... the NHS Personal Health Budget. We all wonder where the money is coming from. But it has enabled me in quite astonishing ways, not least Psychotherapy, depth psychotherapy, not GP Surgery based short term counselling. I trained as a Psychodynamic Counsellor, so I know what will keep my chin up.
The crazy thing is, many of my PTSD recent triggers are coming from individuals or organisations that are in that list above, even one who I thought the Local Government Ombudsman had finally 'shut up' for ever, but no, up she pops again. Another story. Another battle. Another situation where there is no independent professional advocacy to sort it out with me.
At least I don't have to go and live with my mother (which would have been my only option just a generation ago) - and, really, to date, so far, as far as we know, there is no danger of me being carted off to the Work House and made to sing for my supper, or scrub floors.
Don't quote me on that, when that past terror becomes our future reality. You read it here first.
Maybe I am just getting too old to be optimistic. At 59, only a year to go before 'retirement' age - oops, forgot, they moved the goal posts ... another 4 more years, so 64 is the new 60. Which means I will be of 'working age' when PIP arrives next year for us all.
DLA ~ Dearly Loved Allowance. Who would have thought I would think so fondly of you.