Another postcode lottery, like we needed any more.

Last Friday the Department of Work and Pensions made an eleventh hour announcement that they are amending the timetable for inviting current Disability Living Allowance (DLA) claimants due to turn 16 to apply for Personal Independence Payments (PIP).
 

Given the concerns that Act Now for Autism has continually raised regarding the PIP assessment, and in particular the impact of a face to face assessment for anyone who has as autistic spectrum condition, the announcement should have been good news.

However, the whole process has not been paused. We are now facing a postcode lottery roll-out of PIP, which means that some children who are now approaching their 16th birthday will still likely have to endure a face to face assessment in the coming months. Any child who is living in Wales, the West Midlands, East Midlands, or East Anglia will still be invited to claim for PIP as their 16th Birthday approaches.

Some parents who had already received an invitation for their child to claim PIP have told us this week that following the announcement from the DWP they have received a letter from informing them that their child's DLA award will now continue for another 12 months before they can apply for PIP.

It is well documented and accepted by leading professionals that emotional age of a child with autism is often significantly different to their chronological age. We have already raised concerns about the morality of expecting a 16 year old with autism to endure a face to face assessment and we will continue to do so.

The prospect of their children being subjected to a face to face PIP assessment is creating an enormous amount of stress and anxiety for parent carers. Parents are telling us that their children simply will not be able to cope and account for themselves accurately such an assessment.

We are also hearing from parents who are extremely concerned that their children will not have the historical or medical evidence that we are constantly hearing will be required, before ensuring that a face to face assessment will not be necessary.

Autism is not considered to be a medical condition and there are now many areas across the UK where children are no longer seen on a regular basis by a paediatrician or a health professional who could supply up to date and in depth medical evidence about them. We know that some GP's are now delegating the job of filling in medical questionnaires on to their practice managers who do not even know the patients. Some GP's practices have even stopped filling in the questionnaire altogether as they simply do not have the time to do it and others charge a fee.

Once again we fear that anyone who has a diagnosis of autism is going to be placed at a significant disadvantage to someone who has a medical condition and are seen regularly by a health professional.

Finally, a reply...

We would like to thank the Minister Esther McVey for responding to our letter dated 11th April via one of our founders Anna Kennedy. We are pleased to hear that she "greatly admires and appreciates the valuable work" that we do, however we are very disappointed that she is unable to meet with us to discuss the concerns we raised again with her about the PIP assessment process (and the WCA) for adults with autism.

We feel the response from the Minister has somewhat missed the point(s) we raised. While we are fully aware that adults with autism are allowed an appointee and encouraged to take a companion with them, during face to face assessments, this does not always happen. Also the very nature of the condition means that some adults with autism will simply not have anyone whom they can ask to accompany them to an assessment.

Here is her reply, apologies for the poor (and squint) quality! 

 

The point that we were hoping to convey is autism impacts on all forms of communication, including written communication. That is why it is essential that an autism specific advocate is offered at the first point of contact by the DWP, ATOS or JobcentrePlus.
 
We know it is the adults who have not had the support of an advocate, while they are completing their ESA 50 questionnaire, who are most likely to find themselves having a face to face assessment and then being placed wrongly in a Work Related Activity Group whilst facing the trauma of having to launch an appeal. 

The point we were hoping to make to the Minister is that the whole assessment process discriminates against autistic adults because they have a communication and socialisation impairment.

Once again we reiterated there are a significant number of autistic adults who do not have the historical or medical data they require for decision makers to make a decision as to whether or not they might have to have a face to face assessment. There are many adults who have been without services and provision after being signed off by Children’s Services. 

No services and no provision does not equal someone who is not in need support!

We know that autistic adults are at a distinct disadvantage to other people with disabilities in the current system simply because they have either been unable to access services and provision, or the services and provision did not exist for them to access in the first place. 
 
We are extremely frustrated that no one within the Coalition Government and DWP appears to be able to understand that adults with autism are going to find themselves discriminated against and disadvantaged throughout the whole PIP process, as they are throughout the whole WCA process.
 
We will write again to the Minister and continue to reiterate these points! 

Letter to Esther McVey MP, Minister for Disabled People

Dear Ms McVey,

We are writing to you on behalf of our 12,000 supporters to share their concerns regarding adults with autism and the change from DLA to PIP.

We know that the vast majority of  PIP assessments will be made no earlier than October 2015, which is why we are raising these serious concerns now, in the hope that you may look again at the assessment process. We want you to ensure adults with autism are not discriminated against because they do not possess the historical and medical data that will determine if they will need to have a face to face assessment and subsequently if they will qualify for PIP. 

We would welcome the opportunity to meet with you to discuss this fully.

Autism is not a medical condition nor an illness so many adults are not seen routinely by any medical professionals.  Adults with an IQ of over 70 often do not meet the criteria to be seen by the few professionals who are autism experts. There are often no services for adults with autism to access, this is despite many of our adults desperately needing to access services and provision.  The historical and medical data that will decide whether or not they will have a face to face PIP assessment simply does not exist for many thousands of adults with autism.

The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has to date, done very little to improve access to services and provision for adults with Asperger Syndrome and High Functioning Autism.
Carole Rutherford, national coordinator for Act Now For Autism, raised concerns about the continued lack of services, advocacy and provision for adults with Asperger Syndrome and High Functioning Autism when she had the opportunity to speak to Norman Lamb at an All Party Parliamentary Group for Autism meeting last month.

Autism is a communication disability, so adults with autism who have no background evidence of how their condition impacts on them are going to be at a distinct disadvantage from the start of the process. Anyone who has been and is being seen regularly by doctors, consultants and social care professionals are able to supply evidence which will substantiate the impact that their condition has on their lives.

Many adults with autism already have to endure the Work Capability Assessment process without any support. Act Now For Autism has been campaigning for advocates for adults with autism from the first point of contact regarding ESA. We believe autism trained advocates should be offered at the first point of contact re applying for PIP.

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.

There are many adults in our community who no longer have parents to support them. Who will these adults be able to access for support, advocacy and for additional evidence about their condition on their behalf? By their own admission 80% of GP's do not know enough about autism to help their patients or to signpost them to services that could help them.

There is no exact data as to how many adults with autism there are in the UK. Many adults with autism are hidden within our communities, and many of them only survive because of their DLA, which enables them to pay for the additional costs they face because of their condition.

Autism is a complex condition and the community of autistic adults across the UK are going to need a lot of support to navigate through all of the changes brought by the Welfare Act 2012. 

We look forward to having the opportunity to discuss this further in person with you.

Regards

Act Now For Autism 


Act Now for Autism is a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The Core Group members of Act Now for Autism and all of the Regional Coordinators live with autism.

On the 18th October 2010, 6 of our Founder Members handed over a petition at 10 Downing Street with over 6,000 signatures in support of the Act Now for Autism campaign.
                
This was preceded by the official launch of an Act Now for Autism Impact Assessment Report. The report contained the concerns and views of 2924 people who either live with autism or are autistic themselves. We had a greater response for input into our report than Brian Lamb did into his 18-month long Inquiry into the whole of special educational needs.
  
As well as the core group we have a group of coordinators who cover 13 regional areas in the UK including Scotland, Wales, and Northern Ireland. 

We have active supporters on all of these groups who are keeping us informed about changes to provision and services in their area. We are also receiving information through our groups about the benefit assessments that adults with autism are having. We hear from adults with autism who are undergoing benefit assessments, and are suffering from extreme anxiety as a result of their assessment, on a daily basis. 

We currently have more than 12,000 supporters and the number of supporters continues to grow on a daily basis.