There is little over a week now to send me your own contribution to the joint The Broken of Britain/CarerWatch submission to the consultation on DLA reform: rhydian@thebrokenofbritain.org
The submission will be sent off on the 10th of February by special delivery, to be certain that it arrives at the DWP by the 14th of February closing date. I will make every effort to include all evidence that is sent to me, or posted on the relevant threads in The Broken of Britain and CarerWatch forums. Having said that, please try to ensure that the evidence reaches me by the 7th of February at the latest so that I can edit the final document in time. To find out how to help me with preparing the document, click here.
The blog post below is written by Tony of the West Yorkshire branch of the Huntingdon's Disease Association. He has prepared his own submission to the consultation, and it is posted here to give you some ideas. The Broken of Britain/CarerWatch submission is being written on behalf of people who don't have the time/energy/inclination/spoons to write their own, but if you can and are confident in your ability to write, I urge you to send your own submission.
Huntington’s Disease and the proposed PIP
HD is a genetic condition, if you had a parent with the condition there is a fifty - fifty chance you will inherit it yourself. The disease usually strikes in early middle age and involves a progressive physical and mental decline. The most pronounced symptom is the one that gave the disease its old name of Huntington’s Chorea, choreatic movements being uncoordinated and jerky. The cognitive symptoms can be many and varied and differ from person to person, as can the level of disturbed movement, the overall outcome however is always without exception an inevitable decline and death. My partner is at risk of developing the illness, her brother already has it.
Is the ‘Social Model’ of disability up to the job?
The proposed new Personal Independence Payment(PIP) will it is stated, rightly take account of the social model of disability but that model was never intended to be a universal one, there are some people with deteriorating neurological conditions such as HD for whom the social model just does not suffice. People with HD will usually have had jobs and been useful active members of society, it is their progressively worsening medical condition that has lead them to lose those jobs and to require help with their mobility and care. Of course the government should assist them to remain in employment as long as they are able but for the most part we are concerned here with people too ill to be capable of any employment. The ‘barriers’ they face are as much medical ones as social.
Is there a role for a new ‘PIP’?
Where a PIP could have a role with regard to HD is through those people who are at risk of developing the condition. Imagine what it feels like to spend every day of your life wondering if you are going to inherit the illness that you have already seen kill your father or mother? There is a genetic test but as to be tested positive is to receive a death warrant with only the date left blank many choose not to take it. Because of the stresses the disease causes therefore, families of HD sufferers should be entitled to receive help from psychotherapy services currently almost impossible to secure on the NHS. The children of sufferers may need extra tuition to compensate them for missing school due to their caring roles. Such examples are legion and are demonstrative of some of the ‘hidden’ barriers people from HD families face in society currently, for which they receive no help.
The problem of individual assessments
With regard to personal or individual assessments of eligibility; the question has to be asked, what good purpose can this serve? The progression and prognosis of the disease are well known and not subject to massive variation. There has been an assumption, based on sound experience in the past that individuals with HD will have specific needs and the prognoses for the illness have not changed.
Having to undergo eligibility tests for any benefit is particularly problematic for HD sufferers for two reasons connected to symptoms of the disease. HD sufferers are prone to anxiety and obsessive behaviours and the two issues have an unfortunate tendency to come together around issues of benefit applications; many HD sufferers become extremely anxious that they will somehow ‘fail’ an application, and indeed they can become obsessive about it, feeding their anxiety in a vicious circle of behaviour that is incredibly distressing both for them and for relatives caring for them. The language of individual assessments is fine no doubt in many contexts but for some such as those with HD it is the prelude to a living nightmare that can not only ruin day to day living for weeks if not months, but may also through the stress involved actually worsen a person’s symptoms.
There is another reason to be very wary of individual assessments in the case of HD and that is that the condition often carries with it symptoms of denial, this is an organic aspect of the condition known as anosognosia and not ‘merely’ a psychological refusal to acknowledge symptoms. Victims of HD often simply cannot see that there is anything wrong with them; they will indicate that they can perform all sorts of tasks that are in fact way beyond their capabilities, if this is not a potential disaster area of botched assessments and time wasting appeals then it is difficult to conceive what is.
Does the PIP impose its own barriers?
It should surely be a goal of a non means tested disability benefit in a civilised society to ensure that claimants have a standard of living that allows them to live their lives in at least some comfort similar to their non-disabled neighbours, this is after all what the social model of disability is ultimately about. The current system of DLA allows for this in the case of HD sufferers, the proposed PIP however is far too narrow in its view of disability. There is for example little point in compelling sufferers to seek advice from anywhere as the only source of help for them in reality is likely to be the medical professionals they will already have been in contact with.
Finally; there is a danger within the consultation document, hidden but not entirely concealed that in introducing the PIP the government are doing exactly what they claim to be trying avoid namely placing barriers in the way of some disabled people achieving a moderate standard of life and stigmatising some disabled people who do not fall so easily into the paradigm of disability the DWP has decided it wants to help. Sometimes ‘focusing on the individual’ can become the language of the bully, the focus turns out to be intimidating, unwanted and unnecessary.
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