A cost-cutting proposal by Worcestershire County Council has caused widespread alarm among disabled people across England. The council is consulting on capping community care so that, if someone wants to stay at home with support but could be cared for more cheaply in a care home, they will have to do so (unless they can find the resources to make up the shortfall).
This is probably unlawful and certainly goes against national policy on independent living. But, all the same, it is possible that the council will go ahead, in which case others are likely to follow.
Social care: desperate measures
In the UK, employees and their employers pay sizeable amounts in National Insurance and people pay a variety of taxes, expecting in turn to get basic support for themselves, their families and neighbours when this is needed. Many people also volunteer, give to good causes or take other action as part of their commitment to building communities where all can take part.
In England, the National Health Service (NHS) provides healthcare, usually free, and sometimes including long-term care for people with very high health needs. ‘Social care’ such as help with dressing, bathing and carrying out key responsibilities can be arranged through local authorities such as county councils, though often relatives and friends working freely, and services paid for directly by clients, provide much of the assistance required.
However, over the years the social care system (and to a lesser extent the healthcare system) have been starved of funding, in part because planning has taken insufficient account of technological and social change and the fact that people, on average, live longer, but also because the needs of frail older and other disabled people tend to be treated as low in priority. For instance tax cuts (especially for the wealthy), weaponry and war, bankers’ bail-outs and creating money-making opportunities for private contractors have been given greater weight when it comes to use of public funds.
Government plans to close the Independent Living Fund, which assists with care costs, will further affect many disabled people.
Where a council has assessed a local resident as needing such support (though it may contract with voluntary or private sector agencies, or give direct payments to service users to arrange this), it may charge some or all of the costs, depending on the user’s earnings and savings. If someone is placed in a residential or nursing home, the value of their home (if they own this) is taken into account, and they may be forced to sell it.
Sometimes the number of hours of care is not nearly enough, and those with lower-level needs are denied support altogether. Despite all this, funding is not enough, in many instances, to meet basic needs. (Indeed lack of preventive support may, in the long term, have made matters worse.)
A government commission proposed setting upper limits on care charges and promoting additional (private) insurance to help cover the shortfall. But ministers have shied away from tackling the controversial issue of funding. A programme of drastic cuts in public sector funding in recent years, imposed by the ruling coalition, has made matters worse.
Some councils are now desperate. Already, some older people who could stay at home are pushed into care homes where this is cheaper, and Worcestershire is thinking of extending this to disabled adults of working age, a cause for grave concern.
This is not to say that going into a care home should always be a last resort – some are very good, and may be preferred by certain people because they offer companionship or, in the case of nursing homes, the constant presence of a health professional. But some people would prefer to stay in their own homes and communities, enjoying greater control over their own lives. And some institutions are, in effect, warehouses, where at best residents get basic physical care, and at worst even this may be variable.
The value of independent living
The Worcestershire proposal – that ordinarily ‘the maximum expenditure for care packages in the community... will be no more than the weekly cost to Worcestershire County Council of a care home placement that could be commissioned to meet the individuals assessed eligible needs’ – will affect people who need more than a few hours of support per day. This includes both young people entering the adult care system and those who become disabled in later life.
At one time, many disabled people lived in institutions, but this often meant that they missed out on things which others took for granted and their capacities were often under-used. There was a shift to recognising the value of independent living.
Disability rights campaigners who produced the Spartacus Report have produced a ‘Past Caring’ report, analysing the implications of the Worcestershire proposal.
This points out that two groups of disabled people will be seriously affected by this policy.
The first group are those with significant disabilities whose care costs are much greater than the cap but are currently happily living independently in the community
... the Maximum Expenditure Policy will lead to the routine institutionalisation of entire user groups who will be shunted off to care homes for the rest of their lives.
The second group most affected will be those whose care costs are close to the level of the cap.
Such people are likely to make significant changes to their care packages in an attempt to avoid going into a care home.
The desire to remain in the community is usually very strong and therefore people could take quite desperate and detrimental measures in order to avoid losing their independence or their home, or leaving their community and loved ones.
The report also highlights the potential violations of human rights involved, including interfering with private and family life and breaching the UN Convention on the Rights of Persons with Disabilities. A recent report by Parliament’s Human Rights Joint Committee had highlighted the right of disabled people to independent living.
Upholding disabled people’s rights
Those across the country who care about human rights for all should oppose the trend to push disabled people into cheap and cheerless institutional living. It is worth remembering that all but the rich could find themselves in this position. A stroke or serious traffic accident might seriously disrupt one’s life, but to be then forced out of one’s home, maybe having to give up one’s job or volunteer work even if one is capable of working, could make things much worse.
Relatives and friends may also be profoundly affected, as the person whose companionship they enjoyed, and whom they maybe relied on in various ways, is placed in an institution.
For many people of faith and for humanists, there are additional reasons to resist such drastic measures. If each person has a unique combination of gifts and opportunities to use these to benefit others and promote their own spiritual growth, blocking their path in life, and prospects of giving and receiving love, is a serious matter indeed.
While councils do indeed face difficult financial challenges, taking away basic rights from any section of the community is not the answer. Instead, it is time to recognise the value of health and social care, and the need for adequate funding.
* Details of Worcestershire County Council’s Usual Maximum Expenditure Policy Consultation can be found on http://www.worcestershire.gov.uk/cms/social-care-and-health/contacts-and...
* The Past Caring report is available on http://wearespartacus.org.uk/past-caring-report/
* Details of a national consultation on closing the Independent Living Fund can be found on http://www.dwp.gov.uk/consultations/2012/future-of-ilf.shtml
(c) Savi Hensman is a regular commentator on social affairs, politics and belief. She is an Ekklesia associate and works in the care and equalities sector.