Personal Independence Payment delays causing unnecessary hardship

Aspire is concerned with the roll out of the new Personal Independence Payment benefit and the hardship that delays in the system are causing to people with Spinal Cord Injury (SCI). This is of particular concern to those who have been newly injured and are having to wait for months before they received their Personal Independence Payment entitlements. The catalogue of errors and delays experienced by Steve who sustained a Spinal Cord Injury in 2013 is something we believe no one should experience.

On 29^th June 2013, while Steve was still a patient at the NHS Spinal Cord Injury Centre in Sheffield, he completed part I of his Personal Independence Payment claim. He received his first PIP payment on 5^th December 2013. What Steve experienced during this time period is unacceptable.

First of all, Steve felt that the form was incredibly difficult to complete.

“With the amount of information that they ask for, in a lot of places, it feels like an attempt to try and catch you out.”

Secondly, Steve was given dates for potential assessments that Capita were unable to commit to themselves. On one occasion, the assessor did not turn up at the arranged time. When Steve phoned the Capita advice line, he was told that his assessment had been cancelled. Unfortunately, they had failed to tell Steve this.

When the Assessor did turn up, there was a computer error and they were unable to access any files that Steve had sent as part of his claim.

“The whole process was unnecessarily bureaucratic. It was a concerning time for me… absolutely unbearable. Missing appointments, not letting me know. It is a totally inadequate service.”

Steve received help from his Member of Parliament and Aspire was there to help every step of the way. He was able to fight his corner and raise the issue on Capita’s agenda to the extent that senior staff at the organisation’s PIP operation took action. We know that Steve is not alone. We are even more concerned about people who are going through the system without adequate support who do not raise their voices loud enough.  

We accept that where people do successfully receive entitlements, payments are backdated. However, the financial impact that this has on people, especially at a time when they most need additional income to meet costs after having a life changing injury, is devastating. It hinders people’s ability to get on with their lives and be more independent. In one case, Aspire found someone wearing jumpers and gloves in their own home because of the financial difficulty they were facing following their injury. 

Furthermore, we are concerned with the contractors’ ability to cope when reassessments are rolled out on a national scale. The government expects all DLA claimants to have been invited on to Personal Independence Payments by September 2017. With 3.3 million people receiving DLA, this requires on average 825,000 assessments a year, or 16,000 assessments a week, or 3,200 assessments a day. This does not even include new people entering the system.

With so many people affected, it is no surprise that the government had to rethink their approach last year and introduce a more phased reassessment timetable.

As people are going through the process for the new benefit, we are already receiving feedback from people and having to make representations on their behalf to the Department for Work and Pensions and the assessment providers. Indeed our introduction of a new Welfare Benefits Advice Service is testament to the additional support we anticipate we will have to provide to people with SCI as a result of multiple benefit changes.

If you have Spinal Cord Injury and are experiencing any problems with any welfare benefits issues, contact Aspire’s new Welfare Benefits Advice Service on 020 8420 6711 or email welfarebenefits@aspire.org.uk

(*Steve is not the individual's real name) 

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".