Monday, 31 December 2012

Marching Into 2013!

In July 10th 2010 Act Now for Autism took the first steps of a campaign journey that continues on into 2013. In this new year we will review the Impact Assessment we produced in July 2010, we want to know how and where the cuts and changes to benefits are impacting on lives across the UK.

We continue to believe that the WCA is not fit for purpose and in 2013 we intend to add our voice to the campaign for a cumulative impact assessment on the WCA and ESA.

2013 will be the year when we will all really start to feel the impact of the cuts and changes to our services and our entire benefit system.  The coming new year will see all the changes become a reality.

We will see the roll out of Universal Credit for new claimants, which will see the disability element cut. Families will feel the impact of the bedroom tax from April. People will begin to apply for PIP and move over from DLA, a new system and benefit that will include having a face to face assessment in addition to the face to face assessments that some adults with autism are already enduring as part of the ESA Work Capability Assessments.

Adults with autism must be offered access to an advocate at the first point of contact for both the WCA and a PIP assessment.

Changes to funding means that parents continue to fight to prove that their autistic children are disabled enough to warrant services and provision. Act Now For Autism fears that the changeover from statements for children with SEN to Education and Health Plans (England) will do nothing to improve this situation. In Scotland the rollout of the Getting It Right For Every Child strategy is causing concern as is the change to Self Directed Support.

2013 will be the year we must double our efforts - we will need your help. Autism continues to be misunderstood and under-represented. Even within the disability forum at large, children and adults with autism can be marginalised because autism can be a hidden disability.

The English Autism Strategy ‘Fulfilling and Rewarding Lives’ will be reviewed this year and that is something that Act Now For Autism will be taking a keen interest and hopefully an active part in.

The All Party Parliamentary Group for Autism has written to Margaret Hodge MP, chair of the Commons' influential Public Accounts Committee, expressing its concern about the limited progress being made in implementing the Autism Act 2010. Act Now For Autism shares those concerns. There is no level playing field and no national baseline for the implementation of the strategy. It is therefore difficult to measure any overall progress that has been made. We are concerned about the accuracy of monitoring the progress of the strategy within Local Authorities via a self assessment framework. Any assessment should include both service users and the views of those who have been unable to access services that they believe that they require.

We will be pressing hard for autism specific advocates to be given a high priority in the Strategy when it is updated. We believe that having access advocates for adults with autism has become essential and that need will increase again with the roll out of PIP.

We would also like to see much more in the strategy that would move progress towards the needs of adults with Asperger Syndrome and High Functioning Autism being met.

In Scotland the main focus will be the continuing implementation of the Scottish Autism Strategy, we also want to make sure autistic adults of all abilities are catered for. £1.12 million was made available to local authorities to develop strategies and action plans. Local autism co-ordinators are mostly in post now and the strategy continues to be monitored. We will be pressing for autism specific advocates in Scotland too and more robust measures in place for transition into adulthood across the country. We also would like to see better use of the Additional Support for Learning legislation and for the Getting It Right For Every Child ethos to provide better focus on the individual needs of autistic children.

In Wales there was a consultation earlier in the year to further implement the All-Wales Autism Strategic Action Plan strategy. Much criticism was leveled at current support mechanisms like the Community Care and Unified Assessments, as well as CAMHS, CMHT and social services who were felt to have not had either the investment nor the proper training (we know this is an issue across the wider UK too) to fully support all people on the spectrum appropriately. 

There has been some success in Wales but it's time to listen to the concerns of those on the spectrum, individuals and families in Wales and to provide better basic support for life skills, employment/self-employment opportunities - the same can be said across the UK. 

On December 3rd The Northern Ireland Government launched a document for public consultation aimed at achieving improved outcomes, services and support for people with autism, their families and carers. We hope to be involved along with members of our NI regional group. There are major gaps in provision in NI and we need to increase pressure on the Government here.

2013 is going to a BIG year for the Autism Community in England, Northern Ireland, Scotland and Wales. Act now For Autism is committed to campaigning for the Autism Strategies across the UK to be improved and above all, to be more inclusive of all people on the spectrum and to be the very best strategies in the world!

We are going to need YOU to help us march through this year and continue our campaign work and update our impact assessment. Now is the time to be proactive, people across the country will now start to feel the changes and fully realise what is going to happen. 

We have to stick together, work together and shout together with one voice.

March with us!


Monday, 24 December 2012

Merry Christmas!

We know Christmas can be a very tricky time for autistic children and adults but we really hope you can enjoy a peaceful, calm and happy Christmas.

Carole, Teresa, Mavourneen and Anna xx


Thursday, 20 December 2012

My Life With Autism - ESA50

Continuing our series My Life With Autism, our campaign manager Carole Rutherford wanted to share with you her experience of completing the ESA50 form for her son when he migrated from Incapacity Benefit to Employment Support Allowance: 

"The Work Capability Assessment was the only thing that the eldest of my two sons with autism could talk about. We had to endure question and answer sessions about the assessment every time we sat down to eat our evening meal. This started in 2 years ago when my son realised that he would have to be migrated from Incapacity Benefit and onto ESA.

Despite not having any idea about what questions he might be asked my son had a practice run every day of what he would say in response to any question that he would be asked.

My son has Aspergers Syndrome. He also has Keratoconus, which is a degenerative visual impairment. He has OCD, multiple allergies, asthma, he suffers from headaches on a daily basis and has 3 separate skin conditions all of which become much worse when his levels of anxiety increase. He also has extreme sleeping issues. His body no longer works to a 24 hour cycle.

My son has never worked.

He stopped going to school after he was hit by a car while going to school in an extremely distressed state when he was 11 years old. He never returned after the accident. He never leaves the house on his own and even when with someone I can probably count on my fingers how many times he has left the house this year.

After weeks of incessant talking about a Work Capability Assessment, during which time his anxiety levels rose to a level that I could no longer ignore, my son decided that he did not even want to hear those words used in our house. He could no longer cope with even the thought of a face to face assessment with a stranger in a strange environment never mind talking about it.

I spent a year trying to access someone in mental health who could help to support my son. The fact that it took that long for me to find someone who was willing to see my son only underlined how isolated within our Local Authority my son is. There simply were no services that were designed to meet my son’s complex needs. Had he been diagnosed with autism we could have seen someone within a very short space of time, but his Asperger Syndrome excluded him from any services that we did have.

 It was one day back in July (2012) when we received the call from JobCentre Plus. After checking that I was in fact my son’s appointee the Jobcentre Plus adviser was happy to speak to me. I was informed that the phone call was being made just to make sure that my son had received a letter telling him that he was being migrated from Incapacity Benefit to Employment Support Allowance. He had not. I was then read the content of the letter. The letter was quite short and to the point; I was feeling increasing sick and anxious with every word.

I was told that an ESA 50 Questionnaire would follow our conversation and I requested that everything for that point be addressed to myself and not my son. I was assured that it would be.
The ESA 50 arrived two weeks after the telephone call and even though I knew exactly what to expect having read the ESA 50 on numerous occasions on the internet, looking at it and knowing that every answer on that Questionnaire counted raised my levels of anxiety. And so it continued. I cannot remember feeling as anxious as I did at that point. My every waking moment was taken up by the ESA50 questionnaire and it was also the first thing I thought about the moment I woke up.

Answering the ESA 50 was a nightmare. Even though I knew that the questionnaire did not ask questions in a way that was going to make it easy for me to reflect the difficulties that my son has on a daily basis, trying to do just that was probably one of the hardest things I have ever had to do.  It took me three weeks to complete. This is despite being able to access support and advice about the questionnaire. My stress and anxiety levels rose on a daily basis. Just thinking about the questionnaire made my heart race and I spent all day and every day on a heightened state of alert.

The questions simply did not allow for the complexities of autism and I realised very quickly that they did not allow for the complexities of his degenerative visual impairment either.

Finding a way to clearly outline the problems that my son has functioning on a minute to minute basis, never mind on a daily basis, left me feeling mentally exhausted.  I found myself thinking about my answers to the questionnaire all of the time and going back and changing and amending my answers. I became totally obsessed with the questionnaire and found it difficult to focus on anything else.

Eventually I decided that I could make no better of the answers that we had given and so we sent the ESA50 to Atos.  I had read that it could take weeks to hear back following receipt of the questionnaire and it was difficult to keep a lid on my ever growing sense of ill ease.

My anxiety worsened because I knew that our wonderful GP was on holiday at the time the questionnaire was received and then became ill so the request from Jobcentre Plus to supply them with information about my son and his medical conditions would lie in his in tray.

I waited for the post every day and every day the sense of dread increased. I am currently waiting for an operation and I decided to ask if it could be postponed until we knew  the outcome of my son’s transfer from IB to ESA because I knew that there was no way that I could cope with my son if he had to have a WCA post op.

When news finally arrived it came via a small piece of paper that was attached to an ESA 3 questionnaire. The slip of paper read:

 ‘Dear Sir/Madam

As you have been placed in the ESA Support Group following conversion from Incapacity Benefit, you may qualify for Income Related ESA. To claim this complete and return the enclosed ESA3 form.'

The words ‘support group’ jumped off the page at me but as there was no letter with the questionnaire I was not sure that I dared hope that this was really about my son.

The new questionnaire was addressed to me. The day after the new Questionnaire arrived we got a letter confirming that my son was in the support group. It arrived on the same day as my youngest son’s DLA renewal forms.

It is safe to say that I personally heaved a sigh of relief but I also expected to feel as if an huge weight had been lifted from my shoulders, strangely I did not. Maybe because I know that it does not end there. My son will have to be reassessed again at some point in the future.  I also know that he could never handle this process on his own. He simply could not cope. I am not sure that I did.

I have spent the last two years campaigning for advocates to be offered to every adult at the very beginning of the WCA process.  I had an inkling of how difficult this process was for adults with autism and their families, from what I have heard and been told via Act Now for Autism. But not until I took the phone call from JobCentre Plus did I have any idea at all as to just how much the process was going to impact on me and my emotional well being.

If we had had a raft of medical evidence to draw on maybe I would not have felt as stressed out and anxious by the process as I did. But my son, like a great many other adults with autism, was cast adrift from services and support when he was signed off from Children's Services when he was just 16 years old. The whole process really brought it home to me just how much we are failing adults who have recognised communication and socialisation impairments.

Autism is not an illness but it sure as heck impacts on the lives of those living with it, so WHY are we still having to fight for the support and services that both children and adults need? WHY despite having an act of parliament dedicated to autism are our vulnerable adults not being protected and given the support that they desperately need when going into a benefit assessment situation?

As it stands at the moment the Autism Act and the Adults Autism Strategy 'Fulfilling and Rewarding Lives' is not ensuring that adults with autism are able to access the professionals and advocates they need to be able to access at a time when they are in most need."

Wednesday, 19 December 2012

#PatsDebate - The WRAG - A Ticket To Nowhere

From Carerwatch

+ PATS DEBATE – the WRAG – a ticket to nowhere

December 9th, 2012

ESA WRAG is a ticket to nowhere.
CarerWatch hope that Employment Support Allowance (ESA) will be put fully under the microscope for the first time in Pat’s Debate.

In particular that speakers will look at the Work Related Activity Group (WRAG) and tell the real truth about it.

The government should admit that the WRAG is not about finding work. The WRAG is simply about moving sick and disabled people from an unconditional benefit to a means tested benefit to save money.

Four fifths of sick and disabled people will be allocated to the WRAG on migration from IB. It’s becoming clear that ESA is an out of work benefit like JSA. It wasn’t protected from the inflation cap in the Autumn Statement. You are expected to find work.

It treats people as effectively fit and time limits them to a year before means testing. The feature that terrifies most disabled people is the coercion in the Work Programme with forced work placements and sanctions for non compliance. It is unfair to force these decisions on disabled people if you haven’t walked in their shoes.

The cover story is that these people are on their way to work when in fact only 1.5% of sick and disabled people are finding work through the Work Programme in the WRAG.

The WRAG is a confidence trick for moving to means testing disability support.

Can speakers in this debate be the first to be honest about this?

The heart ache over the WCA tests is really located in what the future holds when you are allocated to the WRAG.

ESA WRAG is a ticket to nowhere.

Already people are saying that after testing, failing, appealing, succeeding, retesting, failing, sanctions, Work Programme, when the means test is looming and they know they will not get any more support – they give up and drop out. 

Don’t let the people who give up and walk away count as people who disappeared and probably got jobs. They didn’t. They just gave up.

+ The WRAG is a JSA group

November 21st, 2012

Commenting on Professor  Harrington’s latest report the Minister for Employment, Mark Hoban, said:
“The WCA is the right process for determining who is able to work and who needs support. It is in everyone’s interest to make sure the system is as fair and as accurate as possible. ”

Once again the Minister is completely missing the point. The government has decided that four fifths of people who used to receive Incapacity Benefit are now fit for work. This has been decided not by tests but as a matter of policy. The tests are a fig leaf to legitimise this decision and present them with the news. The terms ‘fair’ and ‘accurate’ do not apply.
People who are able to work go on to JSA. People who are sick or have a disability are meant to go on to the Employment and Support Allowance but they don’t except for a minority who go in to the small residual ESA Support Group. Where do the others go? In to the ESA Work Related Activity Group (WRAG).
This is a trick. The WRAG is described as an ESA group but is in all but name a JSA group. There they will be harried by forced activity and sanctions and then timed out just like a JSA group. Effectively they are being required to work.
It would be more honest if the government stopped hiding behind a testing system and just announced that in future four fifths of sick and disabled people are now going to be treated as fit people.