My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.
The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.
The event explored learning disabled people’s views on community, relationships and employment.
I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.
I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.
What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.
Raana didn’t fancy making a speech or taking questions, hence the film with captions.
Sarah can tell you how quickly things fall apart. She has learning difficulties and mental health problems. She received benefits until a Department for Work and Pensions medical examiner assessed her as fit for work, without taking into account her mental health problems. Her benefits stopped as a result. She had difficulty understanding her letters and avoided opening post so she wasn’t aware of her rent arrears or that she was falling into debt.
When Sarah was threatened with eviction she decided to see a lawyer. By looking at the paperwork and making enquires on Sarah’s behalf the lawyer realised why Sarah had fallen into debt and that her home was at risk. She got advice in three areas so her benefits started again and affordable payments were negotiated on her behalf so her landlord agreed to take no further action.
Yet fast forward to 2013 and, under government plans due to come into force in just over a year’s time, Sarah will not get the same help. She will not even see a lawyer face to face, and will have to call an 0845 number just to get advice. The lawyer will not be able to carry out any preventative work or help with all the problems. Sarah probably will not even be able to afford the cost of the 0845 call. She won’t be able to turn up in person with all the paperwork, like she did before.
The government is putting a bill through parliament that would change the system for legal aid – when the state pays all or part of the legal costs for those who cannot afford them – so advice in certain areas of law would only initially be accessible through a mandatory telephone line. The current proposed areas are community care, debt, discrimination and special educational needs. All of these areas are complex, and often people who need this advice will be distressed, vulnerable and have difficulty understanding their paperwork or explaining their complex situation over the telephone.
There is currently a direct telephone advice line – however people still have the choice to access face to face advice. Under the proposals, this will no longer be the case. You won’t be able to choose the solicitor or visit them in person for initial advice in certain areas of law. This will all be done over the telephone, where someone who may not even be legally trained will decide whether you need legal advice and are eligible.
The reforms come just as councils are also cutting the services they provide. Vulnerable adults will be most at risk as it will be harder to get legal advice to challenge standards of community care or an assessment that they do not qualify.
On 21st November 2011 the Bill was debated in the House of Lords for almost eight hours. It is about to pass onto the committee stage, where peers will examine it line by line. There have been serious concerns from peers about a mandatory telephone line. Baroness Grey-Thompson highlighted this during the recent debate: “The cases of disabled people are complex… If a disabled person has struggled to put their case forward in an assessment process, a phone call will not make it easier”.
This is only one of the major changes being proposed. Other proposals would remove many areas of law from the scope of legal aid, so it will no longer be available for many parts of family and immigration law, and no problems dealing with employment, clinical negligence, or welfare benefits.
All of these proposals if introduced will affect many vulnerable and disadvantaged groups in our society, particularly the disabled. The government’s own figures reveal that 58% of people who lose legal aid for benefits issues will be ill or disabled. However despite this, the government is still adamant that the bill should go ahead as initially drafted.
The disability charity Scope points out that the Government has not recognised that legal aid is an essential element for the success of wider welfare reforms, helping people get the right decisions to access support they need to help them into work. With the Government completely overhauling the entire benefits system even more people will find themselves struggling like Sarah. More people will need advice, and it is more likely that errors will be made as DWP staff get to grips with the new rules. However unlike Sarah they will not be able to get the legal advice they so desperately need to prevent themselves from fighting fire.