DWP Factsheet: Support offered by Jobcentre Plus for customers with additional support and communication needs

Letter to Chris Grayling, Minister for Employment

Dear Mr Grayling

We are most concerned about the information that is being displayed on the DWP site for customers with additional support and communication needs http://www.dwp.gov.uk/docs/ib-reassessment-additional-support.pdf

The Factsheet states that ‘Customers will receive a letter from Jobcentre Plus telling them that their benefit is being reassessed. Jobcentre Plus will then call the customer to discuss how this change will affect them and to answer any questions.’  Adults with autism will need to be offered support and the opportunity to access an advocate/communicator before the phone call takes place.

The Factsheet continues ‘During this telephone call the customer will be asked if they have any additional communications needs.’ Without support an adult with autism may be unable to identify their own communication needs and being unable to identify and label how their disability impacts on their life is one of the problems that adults with autism face. Therefore it is absolutely essential that adults with autism require an advocate/communicator to be present with them when the phone call is made.

We acknowledge the fact that Jobcentre Plus will support a customer’s right to have representation but an adult with autism needs to be aware of this at the first point of contact. Arrangements then need to be put into place to ensure that support is offered in the form of either an independent trained advocate or someone who the person with autism is comfortable with and who they are happy to help them to communicate effectively.

The factsheet continues by giving specific information for customers for whom English is not their first language, customers who are visually impaired and customers with hearing and speech impairments. The factsheet excludes anyone who has a diagnosis of autism which is a recognised communication impairment.

The factsheet is totally inadequate and should be withdrawn until a proper system can be put in place before any contact is made by Jobcentre Plus.

Email from the President of SAFE (Supporting Asperger Families in Essex)

I am the President of SAFE (Supporting Asperger Families in Essex), a local charity run by unpaid volunteers like me.  I run ASAP (Asperger Syndrome Adults and Parents).

So far I have ten adult members in North Essex reporting that following a Work Capability Assessment, they have been taken off long-term Incapacity Benefit and have been declared 'fit for work' despite supporting evidence to the contrary from Consultants, social workers and GP's.  This has left these adults in a state of despair and their mental health has spiralled down into deep depression.  Their families are also badly affected.

It is all too obvious that the ATOS healthcare professionals who carry out these Assessments have had NO appropriate training in ASC, and are not taking this evidence into account when making their decisions.

This is a shocking and discriminatory tactic to force vulnerable autistic people into looking for work which is not there, and setting them up to fail, thus increasing their sense of low self esteem.

I am doing what I can to raise awareness of this issue in Essex and have advised people to appeal against these decisions with ATOS and the DWP, but I fear their understanding of autistic difficulties regarding employment is zero.   I am deeply concerned.

Keep up the good work!

Our reply to SAFE

We are almost speechless and certainly shocked and disgusted. We are however sadly not surprised. Would you like ACT NOW to flag up what has happened in Essex? Have you written to any Ministers about what has happened? Also would you mind if we added it to our list of cuts and changes please?

We have heard that the ATOS health care professionals are going to be given a training module on autism. We are at the moment trying to find out what that module will include and who put it together. However clearly these assessments are up and running without any training being given to these assessors and this really shows that they neither care nor feel any responsibility towards people with autism enough to get it right.

We are at the moment trying to set up an ACT NOW network and are asking people if they would be willing to be coordinators because we want to gather as much information as we possibly can about what is happening in every area across the UK. I know that that is a tall order but we currently have 6000 supporters so we are hoping that we get a good response from them.

Please do keep in touch with us. We all need to act together if we have any hope of being heard, and we are afterall the people who are living with autism 24/7.

Disability Living Allowance Reform and Autism - our response

Today we have sent a letter to Maria Miller, Minister for Disabled People on the Department for Work and Pensions (DWP) proposals for a new benefit Personal Independent Payments (PIP).  You can read the public consultation here

A copy of our letter has been sent to Ian Duncan Smith and Paul Burstow MP.  We welcome your comments, thank you.

Dear Mrs. Miller

The news regarding the Disability Living Allowance reform and the proposal to replace Disability Living Allowance with a new benefit, Personal Independent Payments, has generated and continues to generate a great and increasing deal of concern within the autism community. To date we have already been contacted by many concerned parents and adults with autism who are extremely worried about the face-to-face meeting with an independent healthcare professional who may have little understanding of the impact, nature and complexities of autism, allowing an in-depth analysis of an individual’s circumstances to be carried out.

ACT NOW (Autism Campaigners Together) would like to know who the DWP are working in collaboration with while they develop an objective assessment of individual need for people with disabilities. We would like to know which independent specialists in health, social care and disability are contributing to this process, who the specialists are, their qualifications experience/expertise and how many adults with autism are taking part. 

As you will be aware ACT NOW has already raised concerns in our letter dated 5^th November and the same letter to you via email on 30^th November regarding the benefit assessments and works capability assessments that adults with autism are already being subjected to in some areas. In our letter, which we are still awaiting a reply to, we also asked for an assurance that the Employment Support Allowance, Disability Living Allowance and Incapacity Benefit assessments are tailored to meet the needs of adults with autism. We would like to reiterate this and ask for further reassurance regarding any assessments that evolve from the Disability Allowance Reform.

We realise that there is now a consultation process underway and that concerned parties will be able to take part in the consultation.  Given the number of questions and the time frame available this is also going to cause further unnecessary stress and anxiety on a group of people who are marginalised, vulnerable and discriminated against.  We also have concerns regarding the consultation and how it has been presented. Although there is an easy read version of the consultation we do not feel that the easy read version is autism friendly.  Adults with autism often have huge problems in being able to fill in forms and that also applies to consultations.  We are concerned that some adults will be put off from responding to the consultation because they would require help to be able to do so.

We believe that it is important that members of the autism community are reassured that adults with autism and their families are fairly and accurately represented within the core consultation group.  Autism is a vast spectrum.  It is a spectrum of people as well as disorders with no two people with autism the same, therefore it is important that adults with autism are properly represented.  The ACT NOW Campaign has some 6,000 supporters to date and this number is rising daily, including adults with autism.  We would like to request an opportunity to meet with you and your colleagues so that we can discuss this very important and potentially life changing issue with you.

This is a time of great change and reform for the autism community and change can create a great deal of stress and anxiety for people with autism this includes what many may describe as subtle, minor or trivial.    This is why we are asking for a reassurance from you as the Minister responsible and on behalf of the Government, now that adults with autism will have all of their unique, complex, hidden and specific needs and any possible diagnosed or future diagnosed co-morbid needs taken fully into consideration and that those needs will be reflected in whatever this reform brings forth.

There are also concerns being raised within the autism community that the views and concerns of those organisations and individuals who are working in collaboration with the DWP and those that are fed back to the DWP through the consultation will not be acted on. These concerns result from the recommendations that were made by the External Reference Group (ERG) to the Department of Health while they were working on the Adult Autism Strategy as well as the issues that led and remain within the Autism Act 2009.  Despite the recommendation of the ERG, which included many of our top autism professionals as well as parents and individuals with autism, both through the ERG and research that was carried out by Opinion Leader, the strategy reflected very little in the way of recommendations made by that group as did the results of the consultation that preceded the writing of the Autism Strategy.

We look forward to hearing from you at your earliest convenience.

Yours sincerely

Carole Rutherford

Campaign Manager/Founder

Letter to Maria Miller - Minister for Disabled People

Dear Mrs. Miller

Following our brief meeting and discussion at the joint meeting with the All Party Disability Groups on 18^th October, I am writing to you as requested to outline the concerns of the parents, carers and adults with autism who are actively supporting the ACT (Autism Campaigners Together) NOW Campaign.

Only in autism does it appear to be possible to develop speech without an underpinning of communication. This is a very important factor that must not only be taken into account when someone is communicating with someone on the autistic spectrum, but must also be fully understood.

Unlike a typical child, where communication precedes and is the context for language development, in a child or adult who is on the autistic spectrum, speech, reading and writing may develop without communicative underpinning. This means that speech may not be used for communicative purposes in the way that most of us would expect to be the case.

We must therefore not assume that an adult with autism, and that includes adults with Aspergers Syndrome and High Functioning Autism, who has good speech and language abilities will necessarily understand speech and language. Children and adults with autism have problems with both receptive and expressive language which impacts on every aspect of their social interaction and communication and that is why ACT NOW and our supporters are so concerned about the benefit assessments that adults with autism will have to be subjected to.

We would like it to be recognised, accepted and acted on by the Department for Work & Pensions that adults with autism have impairments with both communication and socialisation and that those impairments will impact on both their verbal and non verbal communication. Those impairments will also impact on their ability to successfully understand and fill in any associated questionnaires that they may be required to fill in prior to a medical assessment.

We would like an assurance that the Employment Support Allowance, Disability Living Allowance and Incapacity Benefit assessments are tailored to meet the needs of adults with autism. This includes the assessment questionnaire and how it is worded for adults with autism.

We would like an assurance that all adults with autism will not only be able to access a fully trained advocate to assist them filling in benefit assessment questionnaires, but will also be able to accompany them to any medical assessments that might take place.

We would like an assurance that parents will be allowed to advocate for their adult children with autism.

We would like an assurance that the DWP medical assessors will be suitably and correctly trained to understand the complexities of autism.

We would ask the DWP to allow all adults with autism to have the opportunity to record their medical assessments.

We would like to know if adults with autism will be able to supply the DWP assessor’s supportive evidence to verify the extent that their autism impacts on their lives.

ACT NOW is very concerned that there are a number of adults who have been without services, provision and support since leaving Children’s Services. We would like to know who these adults will be able to call on if a DWP assessor decides that they require additional information about that adult before making a decision regarding their entitlement to benefit.  Who will these adults with autism be able to access help from should they need expert supportive evidence about their condition?

Currently it is our understanding that those adults who are in receipt of the high rate component for care Disability Living Allowance will not require an assessment to continue to claim Employment Support Allowance.  We would like to know if this will continue to be the case for those adults in receipt of Incapacity Benefit who will begin the transfer onto Employment Support Allowance from March 2011.

We look forward to your earliest response on these matters.

Yours sincerely

 

Alison Wiles

Founder