Hope for seriously ill children facing long stays in hospital.
A successful challenge in the Supreme Court, to the law limiting benefits for children in hospital, will bring hope to around 500 families with seriously ill children every year.
Evidence submitted by Citizens Advice Camden to the Supreme Court detailed the experience of families of very sick children at Great Ormond Street Hospital (GOSH). It showed that parents are required to attend hospital to look after their children all through their stay and that their caring responsibilities for their children often increase. However the government takes the view that, after 84 days in hospital, a child’s needs are being met by the NHS and so Disability Living Allowance (DLA) for that child should stop.
Citizens Advice Camden detailed why the 84 day rule is so unfair:
Melody Driscoll is a 7 year-old girl with Rett’s syndrome—a seizure disorder and intestinal failure. Her DLA was stopped in January 2014 after 12 weeks at Great Ormond Street Hospital. Although she was later transferred to a local inpatient unit, she was not discharged until May 2015. Melody’s mum, Karina, who herself has spina bifida, and her husband, needed to be with her at all times. They had to keep her calm so she would tolerate feeding, medication and various treatments. They also had to look after their other children. They lived about two hours from Great Ormond Street so spent vast amounts of time travelling. This was an overwhelmingly stressful situation for the family and the loss of Melody’s DLA came at a time when they were at their most vulnerable.
Any child who spends 84 days in hospital has very complex medical and care needs. Most parents and carers take an active part in their child’s medical management throughout their stay in hospital. The hospital often relies on the parents to communicate with the child, distract them during treatment, identify and treat pain and deterioration, comfort the child, take assent for treatment.
In the Supreme Court case featuring Cameron Mathieson on 8th July 2015 the evidence from Citizens Advice Camden and other charities helped judges reach the unanimous decision that it was ‘grossly unfair’ to stop the DLA payments for Cameron after he spent more than 12 weeks in Alder Hey Hospital, Liverpool. It was also ruled that it breached his rights under the European Convention on Human Rights.
Although the 84 day rule is still technically in law, it is now possible to argue that it should not be applied cases similar to Cameron’s. The ruling is expected to affect around 500 families each year and should be of enormous value to some of the country’s most vulnerable children and their families.
Notes for Editors
- Citizens Advice Camden delivers a specialist welfare rights service on site in partnership with Great Ormond Street Hospital. This service is situated at GOSH in recognition of the overwhelming evidence linking poverty and inequality to poorer health.
- Citizens Advice Camden is a registered charity and a member of Citizens Advice.
- Disability Living Allowance (DLA) is a benefit which can be paid to children under the age of 16 years with care and/or mobility needs as a result of a mental or physical disability. If a child is getting medical or other treatment free of charge as an in-patient in a hospital or similar institution, s/he can only get DLA for up to a maximum of 84 days. This is the rule that was held to be unlawful in Cameron Mathieson’s case. If the child is in hospital when s/he first claims, DLA cannot be paid until s/he leaves.
- Contact: Nick Wright or Sushila Snell Citizens Advice Camden at Great Ormond Street Hospital on 020 7829 8896.
Benefits Scroungers, Jobcentre Plus Failures or a Punitive System? Warning! You may find this press release disturbing!
We frequently see people whose Job Seekers Allowance (JSA) or Employment Support Allowance (ESA) have been suspended – “sanctioned”! This means they have no visible means of support – no money coming in. We have summarised 49 of these cases.
MR X was offered a job interview which clashed with an appointment at the jobcentre. He attended the interview, but his job seekers allowance was stopped for failing to attend the jobcentre appointment.
We have found real problems with the way that the sanctions regime works, for example:
· Claimants being given no chance to discuss a potential sanction with the Jobcentre Plus officer applying it so that perfectly valid claimants’ actions are ignored.
· Claimants only finding out about a sanction when an expected payment doesn’t materialise.
· Sanctions being applied despite the claimant acting on the advice of Jobcentre Plus.
· Sanctions remaining in place while Jobcentre staff re- examine their own decisions following a Claimants complaint.
· Jobcentre Plus staff operating on a guilty unless proven innocent approach – the claimant is assumed to have no valid reason for non-compliance.
Mr Y arranged for himself a course to improve his employment prospects, which was agreed by his jobcentre adviser, who then stopped his job seekers allowance for failing to apply for jobs during the course.
Camden CAB Chief Executive Jan Knight said:
“We think that the cumulative picture highlighted by these cases gives real cause for concern. JSA and ESA are set at levels which make affording day to day living quite challenging, so if any payment is missing there will be an immediate and severe impact on the claimant and potentially on their family. Many of these people are already in such dire straits by the time they come to us that they already had to resort to using food banks.
“We understand that the benefits system needs to be policed, but we would like to see the system operated with humanity and in a way that allows claimants to retain their dignity. Most people do not want to be unemployed. Imagine how you’d feel if you lost your job or became ill or disabled and had to claim benefits. It can be devastating.
“Claimants are expected to be responsible in preparing themselves for work and in identifying and applying for jobs. However, too often they are treated as if they are incapable of making reasonable decisions and small mistakes are given zero tolerance in a way which most of us would find unreasonable.”
In April, Citizens Advice reported on the rise in benefit sanctions nationally so we at Camden CAB decided to look at individual cases. Read the 49 cases and imagine how you would feel if this were you or a member of your family.
Some of the people involved have agreed to be interviewed.
NOTES TO EDITORS:
CAMDEN CITIZENS ADVICE BUREAUX SERVICE
1. Camden Citizens Advice Bureaux Service is a Registered Charity. We are a member of Citizens Advice and our service is provided by unpaid volunteers who are supported by a team of paid supervisors, managers and specialists. We provide FREE, CONFIDENTIAL, IMPARTIAL and INDEPENDENT advice. We have three Citizen Advice Bureaux in the Borough providing services to well over 10,000 clients a year.
2. JSA is currently £72.40 a week which is half of the Government’s (income) poverty line for single adults and half what a pensioner with basic state pension and pensioner credit receives. Unlike pensioners, JSA claimants also have to pay some council tax and the bedroom tax where this is applicable (http://www.poverty.org.uk/reports/unemployment.pdf )
3. The attached summary of our cases on sanctions represents many of the clients we saw in this category from April 2013 to March 2014. Nationally, Citizens Advice reports that there has been a 60% spike in the number of people seeking advice as a result of increases in the length of benefit sanctions. http://www.citizensadvice.org.uk/index/pressoffice/press_index/press_20140415.htm
4. ESA sanctions by mid-2013 were running at over 8,000 a month in Great Britain, having been around 1,000 a month in 2011. JSA sanctions were around 111,000 a month in 2011 and had risen to an average of 164,000 a month in the first six months of 2013, and were for longer periods. (DWP statistics)
5. Applying a sanction doesn’t always save money because the cost to the DWP of re-establishing the benefit is at least £160. JSA and ESA can be “passport” benefits so that claimants can also get Housing Benefit and Council Tax reduction. A sanction can have the effect of removing these entitlements, and the providing local authority will be informed. The claimant is then likely to qualify for and have to apply again for these benefits on the grounds of low income. Some will not, and are likely to fall into rent and council tax arrears. For those that do, this is a significant extra administrative burden and cost for the local authority.
6. A recent Work and Pensions Select Committee Report claims jobcentre staff refer many claimants for a benefit sanction inappropriately and have no consideration of the financial hardship caused
7. As a voluntary sector organisation with many part time staff and volunteers we do not employ a full time press officer. Contacts for this story are:
Jan Knight, CEO, Camden Citizens Advice Bureau Service, 020 7383 9108;
Nicholas Embling, Social Policy Coordinator, Holborn CAB, 07906 272815;
Ines Newman, Social Policy Researcher, Holborn CAB, 020 8340 1926.