Posted by: rosa alba | August 16, 2014

I Care, I vote: iScotland. Weighing the Worth of Humanity

The UN Committee on the Rights of People with Disabilities appears to be launching an inquiry into alleged “grave or systemic violations of the Rights of Persons with Disabilities” by the government of the UK, the first of its kind. .   The article cited suggests that; “the UK had gone from being an international leader in disability rights to risking becoming a “systematic violator of these same rights”, since 2010, onwards.  An artlcle in the same website, published more than two years ago in March 2012, gives mention to an inquiry report by Baroness Campbell on the reviews to Independent Living Fund (which enables the care of the severely disabled to be undertaken in a domestic setting. In her review, Baroness Campbell  calls on the government to act as the rights of People with Disabilities are being put at risk by the coalition government’s cuts to welfare and disibility services and provision.  
The Rights of People with Disabilities to live in the community with choices equal to others, is detailed in  Article 19 of the UN Convention on the Rights of Persons with Disabilities.  The United Kingdom signed up to this – and other – UN Conventions.

The issues around changes to Independent Living Fund predate the current, and equal worrisome, transition (for those over 16) from Disability Living Allowance, with its “passkey” characteristic of opening entitlement to other benefits, to Personal Independence Payment, with its different criteria for entitlement and different conditions and levels of awards. Many Charitiies and voices of the Third Sector have warned of the impact this will have on people with disabilities and their carers.    People over the age of 65 may be able to claim PIP.  

Nicola Sturgeon has guaranteed that in an Independent Scotland, the provisions for Disability Living Allowance will be restored/maintained (the transition to PIP is a rolling programme for those previously claiming DLA). This safeguards the income and independence of those claiming this benefit as a large component – however meagre – of their income. Speaking on Good Morning Scotland, as reported on the  BBC News website, Ms Sturgeon said:

I want to see an independent Scotland have a welfare system that is fit for purpose but I am deeply concerned about the impact of Westminster cuts on a whole range of people, particularly on disabled people.

We know that these cuts are hitting disabled people disproportionately and what we are publishing today is analysis showing that of the 190,000 disabled people who currently get Disability Living Allowance, as the transition to personal independence payments takes place, more than 100,000 of them will lose either all or some of their entitlement.”

Yes, we need a sustainable welfare system but is anybody really arguing, is the UK government arguing, that 100,000 of the 190,000 long-term disabled people getting help, no longer need it.

One of the benefits  of DLA, at a certain level of award, is that it opens up is the claiming of Carers Allowance for full-time, usually kinship Carers, of those in receipt of DLA; full-time is understood as spending at least 35 hrs a week in caring.  However, at £61.35 per week and with clear restrictions on working outside the home with maximum additional earnings of £102 per week before you are disqualified from its receipt, Carers Allowance is inadequate for purpose, even with DLA (which is for the person being cared for not the carer) and additional  pension credits,  Housing Benefit and the £10 top up from Universal Credit (or JSA), and Tax Credits.

Clarifying entitlement to assorted benefits is a complicated and often requires help from professionals such as Welfare Rights Advisors at Citizens Advice Bureaus or Carers Centres.   What is not understood in that simple statement is the further impact of the exhaustion and stress suffered by many Carers with the constant demands of a needy person, and the frequent interrupted sleep.
The isolation of a Carer is not to be underestimated. 
Years of cutbacks to the statutory provisions and to grants to the Third Sector means we are beyond overdue a the review of provision of adult daycare centres, or in the case of children, adequate childcare for children with Additional Support Needs (ASN) up to the age of 18. Even if children without ASN might manage without childcare from 14 onwards (and I certainly think the current aged 12/end P7  top out is too young to be leaving any minor home all day in the holidays, even if he does not have cogntive impairment or impulse control issues), many mainstream provisions for children up to the age of 12 will not take children with conduct disorders or challenging behaviour, many have no disability access for children with mobility issues and  few if any can cope with children with severe cognitive impairment and/or complex – medical – needs.  Capability Scotland has a scheme called Childcare 4 All that works with childcare centres to address this, but it is nevertheless a work in progress, and places accepting or able to meet the needs of children with ASN remain extremely hard to find. Finding any childcare for children with Additional Support Needs over the age of 12 has proved impossible.  There are around six such places in a  VSA funded initiative in Aberdeen.
Our children deserve better, and our parent-carers deserve better.
For it is not just about kinship or partner carers being able to work in their here and now (nor the implications for future employability, after a period out of the employment market due to caring), it is about stimulus for those we care for, stimulating experiences that promote brain activity, physical activity  and engagement with others that cannot be achieved one to one at home,   Article 19 – choices equal with others for People with Disabilities.

In terms of Children, specifically, The UN (UNICEF) Convention fo the Rights of the Child protects the rights of every child:

to relax, play and join in a wide range of cultural and artistic activities. Article 31

This includes a child with a disability, who

has the right to live a full and decent life in conditions that promote dignity, independence and an active role in the community. Governments must do all they can to provide free care and assistance to children with disability. Article 23

The issues – for Carers – are also no just about respite.  In my case, four years – and two local authorities – in, I am still waiting for occasional overnight/weekend respite for my now almost 12 year old son,  who is once more – as  he has most of his life – sleeping extremely poorly which means awake till 2 or 3 am and, if not “just” ummelling around his room, or jumping on the bed,  trying to ski down the stairs or cook, or..
Equally it is not just about finances or Direct Payments to pay external carers. This is assuming a parent or kinship carer can   can find carers who will provide not just continuity of care but have the skills necessary to care for our loved ones. Once again, personally,  eight adverts and extensive other resourcefulness and local connections  have failed to recruit  any far less adequately experienced carers for my son in two different locations over two years; where I am now, there are eight other families with Direct Payments for Carers but who cannot recruit staff.

What this is about, is the value we ascribe to life.    From an admittedly Catholic point of view, pro-Life is not merely an issue circumscribed by termination of pregnancy or end-of-life care: these stances themselves  imply even require seeing inherent value in every life, in each a beloved Child of God, whom we should love as ourselves. If we adopt or preach a pro-life stance or a humanitarian stance of diversity and inclusion, we have to put our support services where our mouths are.

Admittedly it is not unique to Christianity but is fundamental of humanity to want to care for those we love, as the mother her child, and in the case of Children with Additional Support Needs, parents (or sometimes grandparents) will tend to be and desire to be the principal carers  of these among their children, as they would for all their children. However  to rely solely and exclusively on available kinship care when those care needs and that care role vastly exceeds that of other parents in terms of hours, and energy drain, and when what morphs from parenting to a full-time commitment – a job – is, paid at  lower than subsistance wages, this does not equate the best available or most appropriate care for these vulnerable society members, even if we do not factor in the element of carer exhaustion and burnout.

What it is mediated by is economics and placing a uniform, limited monetary value on the need of and the person of these vulnerable  individuals, and  while aslo undervaluing the long hours and intensity of kinship caring, and the person of the carer, who becomes a commodity.
We exploits the kinship bonds and treats kinship Carers as a means to an end, while defining  the  Children of God, (made in  His image) not as diverse and equal members of society, who happen to have Additional Support Needs and Vulnerabilities, (or even despite their needs and vulnerabilites) but a problems to be addressed with the lowest possible manpower and economical impact. 
A humanitarian position – rather than a Christian point of view – would focus equally on the person and their equal role  and potential contribution to society, rather than on the burden they present.  While animals may leave their sick and wounded to the elements, the sentience of being human, demands more of us than that in modern society.  Having signed up to the two aforementioned Conventions of Human Rights consolidates that moral requirement as a legal right. Unfortunately the current UK has no Constitution, in which the Rights of People with Additional Support Needs can be enshrined.  An independent Scotland will be centred on such a Constitution which codify equality, inclusion and diversity, and prohibit discrimination.

Such a constitution – as with various UN Conventions – will also value the worth of human labour. 

And so, to to return to the practical matter of funds with which to pay external carers: as a mother of a child with severe ADHD, Autisitic Traits and Developmental Coordination Disorder, I am allocated a notional ten hours a week  of Direct Payments with which to pay external carer (in addition to the notional respite and notional holiday package which as with the rest could not be transformed into  appropriate local provision). 
£7,72 an hour for ten hours  a week (admittedly it would be one of many jobs such a person would do), will not secure a single, consistent, adequately trained and resourced carer for a 5′ 5″ soon-to-be twelve year old with significant impulse control issues, a history of flight, self-harm/suicidal intentions and occasional aggressive tendencies.  The (occasional) enhanced rate  of £10. 50 (due to my son’s challenging behaviour) has  also failed to secure anyone. 
A recent “Casualty” television episode showed how inadequately such carers – often young women –  are briefed to the client’s specific needs, far less trained to meet them.  That it was a television drama in this case does not mean it does not echo the reality of the carer who offered my child a *sharp* knife with which to cut pumpkins, inadvertently aroused his – then unmedicated – aggression (a turn of phrase and choice of words).  My son turned on her (and himself) with verbal threats involving the knife, and she fled the house leaving him alone, and the door open. Luckily I was in my then neighbour’s garden and we two managed to de-escalate things swiftly, but the rest of the evening had gone “pear-shaped”.  The carer had not adequate training in terms of de-escalation, nor had she understood the real need for caution over not just sharp implements but certain phrases or words (about which she had been briefed).

I will add that medication has made a significant difference to my child and we no longer have such extreme drama. The issue of how long it took to get accurate diagnosis and appropriate medication is for another blog.

Local Third Sector Agencies (Charities) which provide their own in-house carers for people with ASN  have long waiting lists or no workers at all even in only semi-rural areas, and, cannot guarantee continuity of care – the same person – to work with children and vulnerable adults.  
This, amongst its other negatives, means in having a different, new, carers on a regular basis, you would be contradicting the crucial message of “Stranger Danger” to a child or vulnerable adult  who *might* take into their head the inclination to follow someone who has something of interest to them (not necessarily just the proverbial puppy, but say, a remote control aeroplane or a guitar case with a funny sticker on it), even if they would  not previously trust and engage with the worker they have had twice- weekly for the past twelve weeks (a different – now de-funded – provision when we lived elsewhere).

Once more it is a question of resourcing and budgets: of dealing with an “issue” with minimal manpower and economic impact, although the low-pay of carers of the Elderly, Ill or with Additional Support Needs also exploits the carers themselves: the £7.72 per hourpaid to such carers while more than minimum wage, still reflects a lack of value and worth both of the role of  these workers, in terms of their labour and in terms of the worth of the person they care for. We deploy – rather than employ – the ill-fitted and under-trained  for low recompense in jobs where those who would wish to do their job properly, find the limitations of time with clients – more the elderly, or ill in this case – insufficient to meet the wider array of requirements of the client and the remit of the role.
It is about the value we place on less-than-perfect human life.   

Threatened changes to DLA /PIP and Independent Living Fund, designed meet the speciifc extra needs of those “Disabled” with ASN  but which actually all too often end up in the pot required to make ends meet, given the limitations of Carers Allowance. A related issue is the ATOS assessments of those too ill to work (in receipt of what was Incapacity Benefit, now moving to ESA), assessments which identify the unwell as “able to work” or “having contributed to their illness”,  further devalue the worth we place on human life, and result in benefits sanctions, contributing to the reliance on the growing prevalence of foodbanks in our post-modern, post-industrial society.   It is even more sobering to remember that Baroness Warnock spoke of the impaired elderly in such financially rudimentary terms as “having a duty to die”:

With Workfare and Benefit Sanctions real concerns for many, and regulations or decisions seemingly judged and applied  arbitrarily, we have progressed very little distance from the workhouse  of the Victorian era.  Although it has to be added that historically, the poor or workhouse was not – widely – a component of Scottish society. While the Presbyterian Parish did contribute  to the care of the destitute, the structure and rationale was different: there was a wider ethos of wealth sharing and support, or moral obligation (from religious belief), rather than the concept of the poor, always with us, as a burden.  Catholicism reframes the Jewish mitzvot or tzadakot as Acts of Corporal Mercy: clothing the destitute, feeding the poor, tending to the sick, burying the death. The Gospel of Luke speaks at length of loving all neighbours as ourselves.  That is is charity to be undertaken by choice is erroneous: it is a moral obligation, a moral or humanitarian obligation, I add, that exists on all of us, regardless of adherence to a Judeo-Christian faith.  Tithes were merely early taxes on early Christian worshippers with which to provide the wherewithal to meet these funadmental obligations of social justice and the human rights of the vulnerable.

The issue of Big Society as advocated by Cameron, echoed in the recent statement of “benefits” of foodbanks by a Better Together campaigner who argues that foodbanks enable us to show concern, and caring as brought to light by Stuart Campbell show a need to revisit the quesion of ad hoc personal charitiable provision to care for the vulnerable versus the obligation to meet the fundamental rights of all in our society being overseen by the state, via our tax contributions.  The former opens the potential floodgates of “popular” charities like animal welfare and children’s cancer children receiving all the funding when the less attractive charities that advocate and provide for the homeless, mental health issues, adults with Additional Support Needs and those with hidden disabilities like Autism or ADHD (often “just bad parenting”) receive little. 

Again this is an issue for a different post.

The comments by Baroness Warnock are all together more worrisome.  The naming of the prominent campaign against the erosion of the rights of People with Disabilities “The Black Triangle Campaign” purposefully recalls the Black Triangle of 1930s Germany, and recalls the rounding up of those with mental health issues, and physical or learning disabilities for dispatch to concentration camps, where they would – a burden, less than perfect humans – be exterminated.  Exterminate did not have then the cachet of Dr Who and Daleks – but even that usuage idicates a value placed on such human lives as equivalent to no more than a parisitical insect. 

The fundamental issue, in chosing how to vote in the referendum, is as Alex Salmond pointed out yesterday, the issue of social justice, the value we place on human life in our socieity, and the mark of (hu)man we are ourselves.

I care. I vote for I Scotland.   Are YOU Yes Yet?

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