Dignity - Aspire and World Human Rights Day

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Article 1 in the Universal Declaration for Human Rights addresses the issue of dignity. But what is dignity for a spinal cord injured person?

We estimate that around 25,000 people with spinal cord injury receive some form of care or support to meet their health and social care needs.

People with higher level spinal cord injuries often receive 24 hour care, seven days a week to help with day to day tasks as well as fulfil medical needs.  Having someone there to turn you over in bed, to get you out of bed, provide bowel and bladder care is very intrusive.

What helps is when people’s preferences are listened to. Often these relationships can work well when people actively engage, interact and, as strange as it sounds… be human.

A respondent to our care survey told us, “the carers I have are fantastic, and I think of them as friends and equals. The social services team my Council are brilliant and so are the rehab team at my hospital who had the first contact with the social workers.”

Some on the other hand have a personal preference to have their personal assistants come in, do the job and leave. Personal assistants, district nurses and carers need to be mindful of the need to listen to the person they are caring for.

Even when undergoing assessments for disability benefits or social care provision assessors are seeking minute details on people’s lives. Often this is beyond what is actually relevant to the support being assessed for. 

When it comes to personalised social care, what people spend their direct payments on is heavily monitored by some local authorities. Of course they have a duty to account for money that they are spending on care packages, but some of systems for reporting information are far too invasive and intrusive. Some local authorities still insist on receiving paper copies of every penny people spend with their direct payments, making the whole process bureaucratic and burdensome at the same time. 

People deserve the right to be treated with dignity and local authorities and health commissioners need to be mindful of the feelings of the person being cared for too when carrying their duties. Regular training to care agency staff to instil a culture where the person’s wishes are always at the forefront of staffs’ minds would go a long way to ensure people are helped with greater dignity.

 

Legal challenge against Council's care capping policy fails

A legal challenge against Worcestershire County Council implementing a 'maximum expenditure policy' on social care has failed

In November 2012, Worcestershire County Council announced it would be implementing a policy which placed a maximum cost on the amount they would pay towards an individual’s social care requirements. This maximum was set at the cost to deliver care in a residential care home.

In responding to the consultation that Worcestershire carried out regarding the introduction of this policy, Aspire pointed out that “care in your own home and care in an institution is not comparable. If you are not comparing like for like, how can you possibly compare the cost of the two systems?”

Aspire, local disabled people, and many others, are fearful that if it is more expensive to receive the support at home than in a residential setting, people could be forced into residential care. A Worcestershire resident known as D - a 17 year old who has a moderate learning disability and epilepsy, and who will soon be accessing adult social care services - applied for a Judicial Review of the Council's policy. The case against the Council was that in announcing such a policy they had failed to review what its consequences could be and had failed to comply with its public sector equality duty under section 149 of the Equality Act 2010. Despite ruling in favour of the Council, the judge did warn that:

“...in exercising its discretion as to whether to allow greater costs than the residential equivalent, the Council will be required to take into account its own policy objectives of giving disabled individuals control and choice over their care support, encouraging disabled individuals to live independently in the community, and having less not more individuals in residential care."

“It will also be required to take into account its assurances during the consultation period – and in the course of this claim – that no individual will be forced into living in residential care, as a result of this policy alone.”

So although there still remains fears about the consequences of this policy, it is definitely welcome to have a high court judge state that such a policy must not result in anyone being forced into residential care. This will help provide weight to any future legal challenges if anyone is forced into residential care as a result of this or similar policies.

The worries stretch beyond Worcestershire. There are concerns regarding cuts to social care and the consequences regarding independent living across the UK. In 2011 an inquiry by the Joint Committee on Human Rights into Article 13 of the UN Convention on the Rights of Disabled People received "considerable evidence that disabled people’s right to independent living was beginning to be severely thwarted by the funding situation in this country". The impending closure of the Independent Living Fund (ILF) – another vital source of funding for social care which allows people to live independent lives - is feared to only add to this situation.

Aspire commissioned research which clearly shows the detrimental impact on people with SCI of living in institutionalised settings. Summed up by a research participant called Harry, living in a non-independent setting “wrecks who you are, totally wrecks you, strips you down to the bone, destroys you, takes away your spirit, your independence, breaks you, just breaks you. It took away who I am. I’m just another chicken on the production line. Pluck you, and then wrap you up, and model you into what they want you to be – not who you are. It just breaks you”.

It takes away an individual’s choice and control over their life, creating a prison like environment, and also prevents them from having a family or social life or being in employment. Because of this, we share the concerns of other disability groups that a policy such as that of Worcestershire County Council could result in people being forced to live in residential care.

We believe that disabled people’s right to have the same choices and opportunities as non-disabled people is of paramount importance. We will be watching the implementation of the policy and hope that Worcestershire and other local authorities take seriously the judge's warning that Worcestershire should act on its assurances "that no individual will be forced into living in residential care, as a result of this policy alone".