Friday 28 January 2011

Meeting with Jon Cruddas MP

Seated left to right:  Jon Cruddas MP, John Hopkinson Campaign Co-ordinator, Anna Kennedy PR, Carole Rutherford Campaign Manager

Recently members of the ACT NOW Core Group met Jon Cruddas MP for Dagenham and Rainham.  It was a very positive meeting and we are delighted that Jon has agreed to be our first Patron. We hope to announce more Patrons in due course.

We told Jon about our 'Recording the Cuts' campaign and our intention to publish a report on our findings. He agreed to try and arrange for a debate in the House of Commons once our report is published which, should it happen, will raise awareness of issues of concern to the autistic community.

It is planned to raise our profile in the Press using Jon's connections.

Currently the main thrust of our campaign is on the issues surrounding advocates, assessments and threats to withdraw Legal Aid and the problems faced by autistic people who lose their jobs. Jon is working with us to raise awareness of our concerns and promote the adoption of possible solutions.

ACT NOW will be inviting our supporters to contribute to our campaign and details will be announced over the next few weeks.

with our best wishes
The ACT NOW Team

Sunday 23 January 2011

Disability Living Allowance (DLA) Reform Consultation Response

Dear Supporters
If you would like to take a few moments to feed into the ACT NOW Disability Living Allowance (DLA) Reform Consultation Response please answer the questions below (you do not have to answer all of them) and email your responses to us act.now@btinternet.com by Monday January 31st.
The consultation can be accessed here http://www.dwp.gov.uk/consultations/2010/dla-reform.shtml

All replies are treated in the strictest confidence.

our very best wishes
The ACT NOW Team

The questions (please see Chapter 2 page 11 of the consultation document)
Note: for ease of use simply copy and paste the questions below into a new email and type your replies underneath each question

1.  What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives?


2.  Is there anything else about Disability Living Allowance (DLA) that should stay the same?


3.  What are the main extra costs that disabled people face?

4.  The new benefit will have two rates for each component:
  • Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support?
  • What, if any, disadvantages or problems could having two rates per component cause?
5.  Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?


6.  How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?


7.  How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?


8.  Should the assessment of a disabled person’s ability take into account any aids and adaptations they use?
  • What aids and adaptations should be included?
  • Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?
9.  How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example:
  • How could we make the claim form easier to fill in?
  • How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify?
10.  What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?

11.  An important part of the new process is likely to be a face-to-face discussion with a healthcare professional.
  • What benefits or difficulties might this bring?
  • Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location?
12.  How should the reviews be carried out? For example:
  • What evidence and/or criteria should be used to set the frequency of reviews?
  • Should there be different types of review depending on the needs of the individual and their impairment/condition?
13.  The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances?


14.  What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process?


15.  Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided?

16.  How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost?


17.  What are the key differences that we should take into account when assessing children?
 

Chapter 3

18.  How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements?


19.  What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services?


20.  What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication?


21.  What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy?


22.  Is there anything else you would like to tell us about the proposals in this public consultation?

Tuesday 18 January 2011

Letter to Chris Grayling MP Minister for Employment

Dear Mr. Grayling

Thank you for your letter dated 20th January 2011, however we feel that you have failed to answer some of the questions we asked in our letter dated 13th December 2010.

We are pleased to be informed that the ATOS assessors are aware of the potentially disabling effects of impaired social interaction, language and communication skills in people with autism and that they are determined to assess customers with autism fairly and accurately.  Unfortunately your letter failed to give us an explicit assurance that all of the ATOS assessors are suitably trained, that the training is accredited and being overseen by an independent body.  Can you please assure us that this is indeed the case with all current ATOS assessors and will be true of assessors being appointed?

Every person with a diagnosis of autism has a significant communication and socialisation impairment; even those with Aspergers Syndrome who often are deemed to be more able than those with a diagnosis of autism. ACT NOW is being told about the inadequacies of the ATOS assessors, that they lack a basic understanding and awareness of the condition of their customers.  We are alarmed that assessors are even overturning professional medical evidence. We do have case studies in support of this.

In your letter you state that the Works Capability Assessment was developed in consultation with disability groups including the National Autistic Society. The NAS states however, as part of an introduction written for Professor Harrington (heading the Independent Review of the Works Capability Assessments for the DWP) that they, along with other organisations, have: 

‘experienced some difficulties engaging with the Department for Work and Pensions around welfare reform and at times, have felt that our attempts to influence the process have been limited, with little evidence that our concerns and objections have been considered, and yet our involvement in consultation has been used by government as a source of legitimacy for reforms.’

Professor Harrington has asked the National Autistic Society, Mencap and Mind to propose amendments for the WCA descriptors.

We believe that there are a great many factors to be taken into account when a WCA is undertaken on an adult with autism. The capability to work or the inability to be capable to seek or maintain employment, for some adults has been heavily influenced by the failure of the state to provide a suitable education and suitable health care, therapies and interventions for these adults, often throughout their childhood. There is substantial recorded evidence of systemic failure to provide suitable education, therapies and interventions for children with autism (see *1,2,3,4)

Even with Works Choice it is difficult to imagine that some adults with autism are going to be able to not only seek employment but also take up their place in a work environment, whilst lacking the basic skills denied them throughout their childhood, and without which it will be very difficult or in some cases impossible for them to successfully maintain their employment.

ACT Now has heard from adults with autism who want to work and some of whom have worked, that if they are finding it hard to cope with their employment and have asked their employers to contact Prospects (employment consultants offering advice, support and training to managers and their teams) their employers fail to do so, leaving those adults to fail again.

Both children and adults with autism find it extremely difficult to start over after they have experienced a failure in their lives, often requiring enormous amounts of support to be able to do so. The Autism Strategy, which many parents and adults believe will not make the difference that we had so hoped for, has not yet had the chance to bed in and so it is too early to determine if there will be any additional and maintained support for our adults in both seeking and maintaining employment.

Whilst ACT NOW understands that being able to record a WCA would undoubtedly be a step in the right direction, it does nothing to reduce the levels of stress or anxiety that adults with autism will experience prior to their assessment unless they are able to access, in their own right, appropriate support. ACT NOW has been speaking to adults with autism and organisations supporting adults with autism and we are being told that people are worried, some even terrified, at the prospect of WCA assessments.

There is a huge amount of stress and anxiety being experienced by adults who so far have not even been asked to attend a WCA, such is the fear factor that is surrounding these assessments.  Even the thought of an assessment is affecting their mental health. This of course is not being helped by revelations coming to light that there appears to be clusters of adults in some areas all being declared fit to work when from evidence on the ground, demonstrably they are not.

ACT NOW is making a national call for Advocate/Communicators for all adults with autism. We believe it is essential that all adults with autism are offered support, at the first point of contact, when it is known a WCA is going to take place. It is unquestionably the case that adults with autism often find it difficult to fill in the forms that usually are required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.

Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.

There are many adults in our community who no longer have parents to support them and who have not been seen by the medical profession for many years and so they will have no medical evidence that they can submit to the WCA assessor. Who will these adults be able to access for additional evidence about their condition on their behalf? Autism is not an illness. Adults with an IQ of over 70 often do not meet the criteria to be even seen by anyone who has an expertise in autism. It is only now that it has been stated in the Guidance, issued in December 2010, that IQ must not be used as a reason to deny an adult with autism an assessment for services or provision. Thus there are huge numbers of adults who have been denied access to assessments and many adults are hidden within our communities unsupported.

ACT NOW must point out that it is unlawful to force disabled individuals with Autism and Aspergers Syndrome to engage in a process where they are substantially disadvantaged.   Furthermore, public bodies need to be mindful of the fact that failure to provide appropriate support will further undermine self confidence and life chances of a group of people who are without question one of the most disadvantaged in our society.

ACT NOW has the support of over 8,000 members of the autism community. The overwhelming majority of our supporters either have autism or are the parents of those with autism, in other words people on the front-line all day, every day.  We speak on behalf of a considerable number of people and believe it would be most helpful if representatives from ACT NOW were able to meet with you to discuss what we believe to be justifiable and serious concerns about the Works Capability Assessments and the process leading up to and after these assessments.

Yours sincerely
*1 Schools fail autistic children - http://news.bbc.co.uk/1/hi/education/5350506.stm

Monday 17 January 2011

Response from Chris Grayling MP Minister for Employment

We have received a reply to our email letter from Chris Grayling, Department for Work and Pensions and are disappointed to learn that he will not be able to meet with us.  However, he has indicated that he will respond to us on our concerns and we will be pushing for a reply!

Saturday 8 January 2011

Please help us to record the cuts!

Check out our new page here for the UK geographical 'record the cuts' groups on Facebook!
We need to do this to assess the impact cuts will have on our supporters.  We require hard evidence that individuals’ health and well-being is being damaged by the actions of central government and councils.

You can assist in three ways: 
  1. By informing us of cuts in your area. Find and join your area Facebook group or email your Co-ordinator direct.
  2. By telling us your story – how the cuts are going to affect you.
  3. By becoming an Area Co-ordinator helping to gather evidence of the cuts
ACT NOW is positively buzzing!   By campaigning together we will achieve change for the better.

Tuesday 4 January 2011

ACT NOW Letter via email to Ed Miliband (Leader of the Labour Party)

Dear Mr. Miliband

I am writing on behalf of ACT (Autism Campaigners Together) NOW.  We are a campaign and pressure group and have no political affiliation.  Importantly, we are not a charity and therefore are not constrained by the rules relating to charities when it comes to campaigning.

Our members and supporters overwhelmingly are people affected by Autistic Spectrum Condition (ASC) or parents and carers of children and adults with ASC.  We are on the frontline 24/7 and collectively have a pre-eminent knowledge and understanding of the practical issues those with ASC or their parents and carers face.

ACT NOW was born in July 2010 from concerns regarding the anticipated cuts in the Comprehensive Spending Review. An Impact Assessment Report was published by ACT NOW in October 2010 (report attached) based on 2,943 pieces of evidence received from parents, carers and adults with autism. We currently have over 7,500 named supporters for the ACT NOW Campaign and our number of supporters is growing daily.

We understand that the Labour Party wishes to re-connect with people.  ACT NOW is a frontline group who is connected to its supporters at grass roots level. While we do not provide any direct services we are the genuine voice of those in our communities disadvantaged through autism.

We are asking you to enter into a dialogue with us, not only in respect of our current concerns about the actions of the present government (and it has to be said the previous Labour administration), but also in the formulation of the Labour Party’s policies for the future.

Our current concerns include:

·         That there continues to be a frightening lack of understanding and expertise about autism spectrum conditions and how they impact on the lives of those with the condition and their families.
·         The unsatisfactory Autism Strategy and the inadequate, woolly Statutory Guidance for local authorities and NHS organisations published by the Department of Health in December 2010
·         The cuts being implemented by local authorities across a range of services which are impacting severely on the health and well-being of people affected by ASC and their families.
·         The process surrounding Work Capability Assessment (WCA) and Employment & Support Allowance (ESA). We have clear evidence that those making the assessments have little understanding of autism and the impact autism has on the ability to hold down a job. We are aware in one area alone 11 adults with Aspergers Syndrome have all been declared fit for work after being assessed by an ATOS professional.
·         Plans to withdraw Legal Aid for individuals wishing to appeal to Tribunals or the Upper Tribunal.
·         Lack of representation as a group of people with a complex disability. We are aware that there are no autism specific groups or charities working collaboratively with the Department for Work and Pensions who are currently consulting regarding the abolishment of Disability Living Allowance which will be replaced by Personal Independent Payment. 

Many of our supporters are literally sick with worry and foreboding at what the future holds for them. 

We hope the Labour Party shares our concerns and are willing to work with us to ensure a better life for those our organisation has been formed to support. We would like to meet with you and/or your Ministers so that we can enter into an open and meaningful dialogue with you and your party.

Yours sincerely


Carole Rutherford
Campaign Manager

ACT NOW Letter via email to Jon Cruddas MP (Labour Party)

Dear Mr. Cruddas

I am writing to you after reading an article published in the Guardian ‘Up to 500,000 wrongly denied incapacity benefit figures show’ on Monday 3rd January 2011.

I am the Campaign Manager of the ACT (Autism Campaigners Together) NOW Campaign. I am also the Mother of two autistic sons. ACT NOW currently has 7,500 supporters. Our campaign only began in July 2010.  All of our supporters are living with autism.

The ACT NOW campaign was born out of a sense of total despair within the autism community that the proposed cuts to budgets coupled with the benefit assessments that adults with autism are required to have would have a catastrophic affect on our lives.

Within 4 months we had 6,000 supporters and we had compiled an ‘ACT NOW Impact Assessment Report’ (report attached) which was based on 2,943 pieces of evidence received from parents, carers and adults with autism, and which we published in October.  Our supporters overwhelmingly are people affected by Autistic Spectrum Condition (ASC) or parents and carers of children and adults with ASC.  We are on the frontline 24/7 and collectively have a pre-eminent knowledge and understanding of the practical issues those with ASC or their parents and carers face.

Our concerns regarding the reassessment of benefits being received by adults with autism are also growing daily. We are aware that in one area alone 11 adults with autism have been declared fit for work after being assessed by ATOS professionals. We are hearing of other areas where this is happening almost on a daily basis now.

Autism is a triad of impairment, two of which are communication and socialisation. Before a diagnosis of autism is made the person with the condition must be assessed as having a significant impairment in both communication and socialisation and yet there are no adjustments being made by providing advocate/communicators for the adults within our community. ACT NOW totally supports your call for a pause in this particular aspect of the government's crackdown. Communicating with the Department for Works and Pensions is proving to be difficult.

We understand that the Labour Party wishes to re-connect with people. ACT NOW is a frontline group who is connected to its supporters at grass roots level. While we do not provide any direct services we are the genuine voice of those in our communities disadvantaged through autism. We would like to ask you to consider becoming a supporter for our campaign and if you would be willing to meet with us to perhaps look at the evidence that we are collecting wrapped around our campaign. We are looking for someone to give us a voice.

Our current concerns include:

·         That there continues to be a frightening lack of understanding and expertise about autism spectrum conditions and how they impact on the lives of those with the condition and their families.
·         The unsatisfactory Autism Strategy and the inadequate, woolly Statutory Guidance for local authorities and NHS organisations published by the Department of Health in December 2010
·         The cuts being implemented by local authorities across a range of services which are impacting severely on the health and well-being of people affected by ASC and their families.
·         The process surrounding Work Capability Assessment (WCA) and Employment & Support Allowance (ESA). We have clear evidence that those making the assessments have little understanding of autism and the impact autism has on the ability to hold down a job. We are aware in one area alone 11 adults with Aspergers Syndrome have all been declared fit for work after being assessed by an ATOS professional.
·         Plans to withdraw Legal Aid for individuals wishing to appeal to Tribunals or the Upper Tribunal.
·          Lack of representation by a large group of people with a complex disability. We are aware that there are no autism specific groups or charities working collaboratively with the Department for Work and Pensions who are currently consulting regarding the abolishment of Disability Living Allowance which will be replaced by Personal Independent Payment. 

Many of our supporters are literally sick with worry and foreboding at what the future holds for them. 

We hope that you will share our concerns and consider working with us to ensure a better life for those our organisation has been formed to support.

Yours sincerely
 
Carole Rutherford
Campaign Manager

Sunday 2 January 2011

ACT NOW Supporters Club!

ACT NOW needs more supporters
We need to become a force to be reckoned with and to do that we need to be able to speak ‘with one voice’ for as many people as possible. Although we did very well with our petition and are able to say that we have just over 6000 named supporters, we need to times that number by around ten if we can. 
We need named supporters. Named supporters can be parents, carers, grandparents, siblings (over 18’s only) aunts, uncles in fact anyone who is a family or extended family member, who can say that they are supporting ACT NOW because they have a relative with autism. 
We are fully aware that not everyone in our families are able, or even want to, access the internet. So we would like our named supporter to ask their family members if they are willing to support the ACT NOW Campaign. If your family members are happy to support us then we need you to add their names to our supporter’s club list. It is important that those who have their names added understand that by adding their name to our supporter’s club this means they are actively supporting the ACT NOW campaign.  
All we require from our supporters is their full name, town of residence, postcode and email address (if any) - there is no need to give a full address. Click here to join us online! or email us act.now@btinternet.com
Please Note:  ACT NOW Autism Campaigners Together are registered with the Data Protection Act Registration No.  1124511 and will not disclose any information to any third party.