Monday, 30 January 2012
PLEASE ACT - EMAIL YOUR MP TONIGHT!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." (Margaret Mead)
Please ACT NOW and email your MP - TODAY!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." (Margaret Mead)
Saturday, 28 January 2012
Autism As A First Language
Every child and adult who has a diagnosis of autism has impaired communication and socialisation skills. It can be very difficult, impossible often, for people who do not understand autism to fully understand and accept this. This can be especially so when you are faced with an individual who is highly verbal who appears to be articulate and adept at communicating.
One of the most exasperating things that parents often have to face on a daily basis is teachers and other professionals who firmly believe that because their child is highly verbal, and can be in fact difficult to shut up, the child is not having problems communicating. Parents who have children with Aspergers Syndrome and High Functioning Autism learn very quickly that ‘they’ are often seen as the one who has the problem and not their child. Parents who have children with autism learn to read their child and they learn to understand how their child communicates or does not. Parents who have children with autism are often the link between their child and the world and become their communicator/ interpreter.
When Tommy or Rachel burst out through the school gates screaming and crying on a daily basis it is the parents who spend hours unpicking conversations that were had in school trying to make sense of them with their child. Often the teachers are unaware that the child spent the whole day not understanding much of what was said to them or asked of them. Or they spent the whole day trying to say something that the teacher or their peers failed to understand.
Children with autism can have a very literal interpretation of spoken word and that can lead to all sorts of problems for them. If the teacher tells them they are going swimming on the bus, or to put their shoes under his/her peg the child will take that literally. So the child is bewildered, stressed and anxious when things turn out differently to what they expected. Non verbal communication is often not in an autistic child’s vocabulary either. Unless someone tells them that there is a problem they simply do not know that there is one. So the ‘hidden’ communication of tapping your foot and folding your arms while you frown at a child with autism is totally lost on them.
The communication problems of children and adults with autism are all too often hidden or masked by them being highly verbal. There is a well know phrase that is often used about people who have problems in communication: ‘not being able to speak is not the same as not having anything to say’. That phrase implies that only people who are non verbal have problems in communicating. There is another phrase that should be used for children and adults who have Aspergers Syndrome and High Functioning Autism: ‘being able to speak is not the same as being able to make yourself understood’.
Children with autism quickly learn how to give the right answer to teachers and adults in authority. The right answer is usually a positive. So if teacher asks Rachel if she understood the question – Rachel will say yes. Rachel will do this because she knows that saying no means that the teacher will explain the question again in exactly the same way and she will still be unable to understand what everyone else in the classroom appears to understand fully.
If Tommy is asked by his teacher if he has had a nice day in school, he will learn quickly that the answer to that question is yes. Saying no will result in his teacher asking him why he has not had a nice day and Tommy will be unable to find the expressive language/right words to explain properly. And so this scenario can play out throughout the school life of a child with autism.
The child learns to look as if they know what they are doing and why. It stops unwanted communications that they struggle to understand.
It can take a highly trained specialist in the field of autism to have the ability to unpick the receptive and expressive language used by a child or adult with autism. Highly trained specialists in autism are very thin on the ground and where autism is concerned (a) little knowledge can be very dangerous thing – for the child or the adult with autism.
If a child or adult came from a different country to live in the UK and for whom English was not their first language, they would probably feel very similar to the way that a child or adult with autism can feel every day of their lives. Being unable to fully understand what people are saying to you or are asking of you can make you feel extremely anxious and stressed.
Trying to communicate effectively with people who do not speak your language can also make you feel anxious and stressed. Children and adults for whom English is not their first language will in time, and with support, learn to speak the language. They might always struggle a little but the longer they stay and are surrounded by the language the more familiar they will become the more able they will become at communicating effectively.
For children and adults with autism, autism will always be their first and primary language. And yet we are doing very little to enable children and adults to communicate effectively. Parents who have children with Aspergers Syndrome and High Functioning Autism often have to fight to access specialist speech and language therapists and no such thing exists for adults.
If you build a house without solid foundations it is going to fall down. If you do not equip a child with the tools to be able to communicate effectively you are setting them up to struggle to communicate throughout their lives.
We expect our children and adults to learn effective communication by sitting next to neurotypical children in schools and in our communities. It simply does not work like that – it is not a process of osmosis. We would not expect anyone from a different country to pick up on how to speak English just by sitting next to an English speaker.
Many of our adults with Aspergers Syndrome and High Functioning Autism have been failed by the school and health system. This is well documented and there is much evidence to support this. These adults have been expected to ‘pick up’ effective communication from their peers and members of their community. The vast majority of adults with autism have spent their entire life with their parents acting as their interpreter /communicator/advocate. There are now a large number of adults with autism who no longer have a parent to do this and those adults who still do have a parent who can support them with effective communication, the parent is often denied the right to do so for them.
Advocates for adults with autism is a big issue. This issue has been highlighted because of the situation that many find themselves in:- benefit assessment/reassessment.
From April 2011 the Contributory Employment & Support Allowance for people placed in the work-related activity group was time-limited to one year. Existing contributory ESA claimants lose benefit at the point they reach one year (including the assessment phase). Those who have been on ESA for more than a year at the point of change lose benefit immediately. Adults who are on/have been on Incapacity Benefit are also having their benefit reassessed via the Work Capability Assessment to see if they are eligible for Employment Support Allowance.
The need for advocacy is recognised and highlighted in the Adults Autism Strategy Fulfilling and Rewarding Lives:
“4.21: We recognise that access to services is inconsistent, and that there are not yet enough advocates available to support all those who would want one.”
The Welfare Reform Bill will substantially increase the need for advocates for adults and it is imperative that advocacy is offered to every adult in a benefit assessment situation and for those advocates to be allowed to enable adults with autism to communicate effectively, no matter how verbal an adult might appear to be.
Autistic people need to be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant”. This ought to apply to all people who have an autism diagnosis, irrespective of their apparent communication abilities. It is essential that their communication difficulties and differences, their communication styles and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.
The change over from Disability Living Allowance to Personal Independence Payments will require every adult who is in receipt of that benefit to have a reassessment. We are particularly concerned about these adults, a great many of whom have had no provision or services or access to any autism specific professionals since leaving Children’s Services.
Adults are being asked to produce medical reports about their condition, as supportive evidence, that they simply do not have. Many are also being denied the right to an advocate to enable them to communicate effectively during the Work Capability Assessment, therefore we are concerned the the same thing is going to happen to adults who have to have a reassessment for Personal Independence Payments.
For some adults the only people providing 'support' and holding evidence of how their condition impacts on their lives will be GP's and even then 80% of GPs who were surveyed by the National Audit Office in 2009 admitted that they do not know enough about autism to enable them to effectively advise or support adults with autism.
We are now extremely concerned about the adults who have no supportive evidence from anyone who is deemed to be acceptable when they find themselves having an assessment/reassessment.
Example:
In Sunderland, which is part of an autism cluster group for South of Tyne and Wear, there is a combined population of 500,000 people. The only health services that are accessible to adults with Aspergers Syndrome and High Functioning in the South of Tyne area are services which are designed for adults with autism at crisis point. There are no other health services to access other than an ad hoc pathway to diagnosis which we are currently working on.
Therefore adults living in this area will be unable to access a health professional with enough knowledge and understanding of autism in South of Tyne and Wear even if they are asked to provide supportive evidence following a WCA or PIP assessment. We know this picture will be replicated across the UK.
As Baroness Browning said during the Welfare Reform Debate in the House of Lords last week ‘Aspergers Syndrome is not autism-light’. However that is the way many people view it and that includes professionals who have not been specifically trained to understand the autistic spectrum.
Advocacy has now become a matter of extreme urgency for adults on the autistic spectrum and one which we believe must be seen to be as such across the political spectrum. To deny a person the right to communicate effectively is denying that person a basic human right. It is morally wrong.
Baroness Thomas of Winchester said that many disabled people, knowing that the government wants to reduce DLA spending by 20%, regard the change from DLA to PIP as: "a horrid game of musical chairs...they all think that when the music stops they will be one without a chair."
ACT NOW believes that those most likely to be left without a chair will be adults with Aspergers Syndrome and High Functioning Autism.
One of the most exasperating things that parents often have to face on a daily basis is teachers and other professionals who firmly believe that because their child is highly verbal, and can be in fact difficult to shut up, the child is not having problems communicating. Parents who have children with Aspergers Syndrome and High Functioning Autism learn very quickly that ‘they’ are often seen as the one who has the problem and not their child. Parents who have children with autism learn to read their child and they learn to understand how their child communicates or does not. Parents who have children with autism are often the link between their child and the world and become their communicator/ interpreter.
When Tommy or Rachel burst out through the school gates screaming and crying on a daily basis it is the parents who spend hours unpicking conversations that were had in school trying to make sense of them with their child. Often the teachers are unaware that the child spent the whole day not understanding much of what was said to them or asked of them. Or they spent the whole day trying to say something that the teacher or their peers failed to understand.
Children with autism can have a very literal interpretation of spoken word and that can lead to all sorts of problems for them. If the teacher tells them they are going swimming on the bus, or to put their shoes under his/her peg the child will take that literally. So the child is bewildered, stressed and anxious when things turn out differently to what they expected. Non verbal communication is often not in an autistic child’s vocabulary either. Unless someone tells them that there is a problem they simply do not know that there is one. So the ‘hidden’ communication of tapping your foot and folding your arms while you frown at a child with autism is totally lost on them.
The communication problems of children and adults with autism are all too often hidden or masked by them being highly verbal. There is a well know phrase that is often used about people who have problems in communication: ‘not being able to speak is not the same as not having anything to say’. That phrase implies that only people who are non verbal have problems in communicating. There is another phrase that should be used for children and adults who have Aspergers Syndrome and High Functioning Autism: ‘being able to speak is not the same as being able to make yourself understood’.
Children with autism quickly learn how to give the right answer to teachers and adults in authority. The right answer is usually a positive. So if teacher asks Rachel if she understood the question – Rachel will say yes. Rachel will do this because she knows that saying no means that the teacher will explain the question again in exactly the same way and she will still be unable to understand what everyone else in the classroom appears to understand fully.
If Tommy is asked by his teacher if he has had a nice day in school, he will learn quickly that the answer to that question is yes. Saying no will result in his teacher asking him why he has not had a nice day and Tommy will be unable to find the expressive language/right words to explain properly. And so this scenario can play out throughout the school life of a child with autism.
The child learns to look as if they know what they are doing and why. It stops unwanted communications that they struggle to understand.
It can take a highly trained specialist in the field of autism to have the ability to unpick the receptive and expressive language used by a child or adult with autism. Highly trained specialists in autism are very thin on the ground and where autism is concerned (a) little knowledge can be very dangerous thing – for the child or the adult with autism.
If a child or adult came from a different country to live in the UK and for whom English was not their first language, they would probably feel very similar to the way that a child or adult with autism can feel every day of their lives. Being unable to fully understand what people are saying to you or are asking of you can make you feel extremely anxious and stressed.
Trying to communicate effectively with people who do not speak your language can also make you feel anxious and stressed. Children and adults for whom English is not their first language will in time, and with support, learn to speak the language. They might always struggle a little but the longer they stay and are surrounded by the language the more familiar they will become the more able they will become at communicating effectively.
For children and adults with autism, autism will always be their first and primary language. And yet we are doing very little to enable children and adults to communicate effectively. Parents who have children with Aspergers Syndrome and High Functioning Autism often have to fight to access specialist speech and language therapists and no such thing exists for adults.
If you build a house without solid foundations it is going to fall down. If you do not equip a child with the tools to be able to communicate effectively you are setting them up to struggle to communicate throughout their lives.
We expect our children and adults to learn effective communication by sitting next to neurotypical children in schools and in our communities. It simply does not work like that – it is not a process of osmosis. We would not expect anyone from a different country to pick up on how to speak English just by sitting next to an English speaker.
Many of our adults with Aspergers Syndrome and High Functioning Autism have been failed by the school and health system. This is well documented and there is much evidence to support this. These adults have been expected to ‘pick up’ effective communication from their peers and members of their community. The vast majority of adults with autism have spent their entire life with their parents acting as their interpreter /communicator/advocate. There are now a large number of adults with autism who no longer have a parent to do this and those adults who still do have a parent who can support them with effective communication, the parent is often denied the right to do so for them.
Advocates for adults with autism is a big issue. This issue has been highlighted because of the situation that many find themselves in:- benefit assessment/reassessment.
From April 2011 the Contributory Employment & Support Allowance for people placed in the work-related activity group was time-limited to one year. Existing contributory ESA claimants lose benefit at the point they reach one year (including the assessment phase). Those who have been on ESA for more than a year at the point of change lose benefit immediately. Adults who are on/have been on Incapacity Benefit are also having their benefit reassessed via the Work Capability Assessment to see if they are eligible for Employment Support Allowance.
The need for advocacy is recognised and highlighted in the Adults Autism Strategy Fulfilling and Rewarding Lives:
“4.21: We recognise that access to services is inconsistent, and that there are not yet enough advocates available to support all those who would want one.”
The Welfare Reform Bill will substantially increase the need for advocates for adults and it is imperative that advocacy is offered to every adult in a benefit assessment situation and for those advocates to be allowed to enable adults with autism to communicate effectively, no matter how verbal an adult might appear to be.
Autistic people need to be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant”. This ought to apply to all people who have an autism diagnosis, irrespective of their apparent communication abilities. It is essential that their communication difficulties and differences, their communication styles and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.
The change over from Disability Living Allowance to Personal Independence Payments will require every adult who is in receipt of that benefit to have a reassessment. We are particularly concerned about these adults, a great many of whom have had no provision or services or access to any autism specific professionals since leaving Children’s Services.
Adults are being asked to produce medical reports about their condition, as supportive evidence, that they simply do not have. Many are also being denied the right to an advocate to enable them to communicate effectively during the Work Capability Assessment, therefore we are concerned the the same thing is going to happen to adults who have to have a reassessment for Personal Independence Payments.
For some adults the only people providing 'support' and holding evidence of how their condition impacts on their lives will be GP's and even then 80% of GPs who were surveyed by the National Audit Office in 2009 admitted that they do not know enough about autism to enable them to effectively advise or support adults with autism.
We are now extremely concerned about the adults who have no supportive evidence from anyone who is deemed to be acceptable when they find themselves having an assessment/reassessment.
Example:
In Sunderland, which is part of an autism cluster group for South of Tyne and Wear, there is a combined population of 500,000 people. The only health services that are accessible to adults with Aspergers Syndrome and High Functioning in the South of Tyne area are services which are designed for adults with autism at crisis point. There are no other health services to access other than an ad hoc pathway to diagnosis which we are currently working on.
Therefore adults living in this area will be unable to access a health professional with enough knowledge and understanding of autism in South of Tyne and Wear even if they are asked to provide supportive evidence following a WCA or PIP assessment. We know this picture will be replicated across the UK.
As Baroness Browning said during the Welfare Reform Debate in the House of Lords last week ‘Aspergers Syndrome is not autism-light’. However that is the way many people view it and that includes professionals who have not been specifically trained to understand the autistic spectrum.
Advocacy has now become a matter of extreme urgency for adults on the autistic spectrum and one which we believe must be seen to be as such across the political spectrum. To deny a person the right to communicate effectively is denying that person a basic human right. It is morally wrong.
Baroness Thomas of Winchester said that many disabled people, knowing that the government wants to reduce DLA spending by 20%, regard the change from DLA to PIP as: "a horrid game of musical chairs...they all think that when the music stops they will be one without a chair."
ACT NOW believes that those most likely to be left without a chair will be adults with Aspergers Syndrome and High Functioning Autism.
Thursday, 26 January 2012
Autism As A First Language
Tomorrow (Friday 27th January) Carole and Teresa are going to Stirling to have a meeting with Anne McGuire MP, Shadow Minister for Disabled People as part of the Shadow DWP team.
We are renewing our call for trained autism advocates to be offered (by DWP/JCP) to every adult with autism when they are faced with an assessment/reassessment and will give her our latest evaluation of the situation the autism community finds itself in - Autism As A First Language. (to be published here tomorrow)
The Welfare Reform Bill is going back into the Commons and so we have to fight harder to ensure the needs of the autism community across the UK are taken into consideration when any 'tweaks' are made to the new structure of the welfare system.
We also have to discuss some of the statements made by Liam Byrne and other Labour MP's regarding Welfare Reform and challenge Labour on it's rather lacklustre opposition to these devastating cuts, which we believe to be immoral and cruel.
Watch this space - we will let you know how the meeting goes!
Tuesday, 17 January 2012
The Highs And Lows.
Last week was a somewhat euphoric week for disability campaigners given the Government defeat at the hand of the Lords, in triplicate!
Today however, the same cannot be said. The Lords today were debating two highly anticipated amendments to PIP as part of the Welfare Reform Bill and it was a Government victory. They defeated a crossbench amendment to delay the introduction of PIP for another year.
Baroness Grey-Thompson had to withdraw her proposed amendment to require PIP assessors to take account of evidence from claimants' GPs - this is a very worrying development. As ACT NOW has said countless times, many adults with autism are living with no support as they were dropped once leaving children's services. The only people providing 'support' and holding evidence of how their condition impacts on their lives will be with GP's.
Lord Freud did give some ground on PIP today, so there were some positives, by rejecting a pilot for PIP he did give guarantees about the transparency and effectiveness of the new system and process.
We are not convinced, we know of people who have taken part in the trial assessments and it (like the WCA) is not fit for purpose and especially not suited to people with autism.
Some have suggested this was a 'win' for disabled people but I don't know of many who are feeling satisfied or that they have won tonight. It's too early to know much of what happens from here with this Bill (other than it's about to be pushed through!) but we do know the Lords were listening to all the people who have taken time to contact them over this last week.
Autism was discussed in the chamber today, which seems to have irked some campaigners but we have to remember, it is a largely hidden disability and alongside all people with hidden disabilities, the autism community is likely to be hit the hardest.
Baroness Browning hit the nail on the head:
Everyone agrees that the current system needs to be simplified and improved. But that is not achieved by cuts, shoddy statistics, late reporting, attempts to subvert parliamentary process (Lord Freud's procedural tactics last week) and statistical evasion. The case for a significant re-examination and re-think on the government's part is overwhelming."
We agree and we'll keep campaigning - keep marching!
We still have no answers about who the 500,000 people are who are set to lose their benefits. We will continue to campaign for trained, independent autism advocates to be put in place and for reasonable adjustments to be made for adults with autism when faced with a largely ignorant society/professionals who know little about the reality of the condition.
Today however, the same cannot be said. The Lords today were debating two highly anticipated amendments to PIP as part of the Welfare Reform Bill and it was a Government victory. They defeated a crossbench amendment to delay the introduction of PIP for another year.
Baroness Grey-Thompson had to withdraw her proposed amendment to require PIP assessors to take account of evidence from claimants' GPs - this is a very worrying development. As ACT NOW has said countless times, many adults with autism are living with no support as they were dropped once leaving children's services. The only people providing 'support' and holding evidence of how their condition impacts on their lives will be with GP's.
Lord Freud did give some ground on PIP today, so there were some positives, by rejecting a pilot for PIP he did give guarantees about the transparency and effectiveness of the new system and process.
We are not convinced, we know of people who have taken part in the trial assessments and it (like the WCA) is not fit for purpose and especially not suited to people with autism.
Some have suggested this was a 'win' for disabled people but I don't know of many who are feeling satisfied or that they have won tonight. It's too early to know much of what happens from here with this Bill (other than it's about to be pushed through!) but we do know the Lords were listening to all the people who have taken time to contact them over this last week.
Autism was discussed in the chamber today, which seems to have irked some campaigners but we have to remember, it is a largely hidden disability and alongside all people with hidden disabilities, the autism community is likely to be hit the hardest.
Baroness Browning hit the nail on the head:
Everyone agrees that the current system needs to be simplified and improved. But that is not achieved by cuts, shoddy statistics, late reporting, attempts to subvert parliamentary process (Lord Freud's procedural tactics last week) and statistical evasion. The case for a significant re-examination and re-think on the government's part is overwhelming."
We agree and we'll keep campaigning - keep marching!
We still have no answers about who the 500,000 people are who are set to lose their benefits. We will continue to campaign for trained, independent autism advocates to be put in place and for reasonable adjustments to be made for adults with autism when faced with a largely ignorant society/professionals who know little about the reality of the condition.
Monday, 16 January 2012
We need 5 minutes of your time - please ACT!
We have been busy making our very grave concerns about the changeover to PIP known to MPs and members of the House of Lords - tomorrow the Lords will debate further amendments to the Welfare Reform Bill, including PIP.
We ask you to take 5 minutes to forward the text below to your own MP and area Peers and ask them to raise it in the commons/Lords. (www.writetothem.com)
This week disability rights campaigners are asking the House of Lords to back an adjournment of at least 6 months between the change over from DLA to the new Personal Independence Payment (PIP) In that time, plans for PIP should be reconsidered with the views of disabled people properly taken into account.
ACT NOW supports the call for an adjournment debate so the views and opinions of people with disabilities can truly be listened to. Adults with autism are currently facing the prospect of two assessments both of which are not fit for purpose and certainly not relevant for a person with an autistic spectrum condition. Neither assessment was designed to reflect the complex needs of adults with autism.
ACT NOW has much evidence that the PIP assessment, recently trialed across the UK, was not designed for adults with autism, it seem the condition wasn't considered! We agree that the new PIP assessment is almost a duplicate of the Work Capability Assessment and we are extremely concerned that adults with autism should have to face the trauma of two assessments not designed in any way to reflect their condition.
We have evidence that any specialism in autism that the Work Programme Providers have is patchy and varies greatly from area to area.
ACT NOW believes that being able to communicate effectively is a basic human right. We are therefore doubling our efforts to make sure that as many MPs and members of the House of Lords as is possible are aware of our campaign. We are reiterating our call for every adult with autism to be offered, can access and is allowed to then use the services of an independent and suitably trained advocate when they find themselves having an assessment/reassessment.
There are other issues that we firmly believe need to be raised and acted upon as a matter of urgency. There are many adults with autism who will NOT have reports from health professionals who are able to provide supportive evidence about their condition after their DLA/PIP assessment if they are asked to do so.
Many adults have seen no one since leaving Children’s Services and in some areas they have no health services for adults to access unless they are at crisis point.
Who will support these adults if it becomes necessary for them to provide reports?
There is a dearth of specifically trained professionals who have the specialism required to understand autism and then write a comprehensive report about how autism impacts on the lives of the individual with the condition.
ACT NOW believes that this issue alone is causing grave concern to many adults who are living alone, isolated and unsupported in our communities. The wellbeing of these adults must not be overlooked. They have been neglected, ignored and ineligible for far too long already.
CALL TO ACT!
We have been busy making our very grave concerns about the changeover to PIP known to MPs and members of the House of Lords - tomorrow the Lords will debate further amendments to the Welfare Reform Bill, including PIP.
We ask you to take 5 minutes to forward the text below to your own MP and area Peers and ask them to raise it in the commons/Lords. (www.writetothem.com)
This week disability rights campaigners are asking the House of Lords to back an adjournment of at least 6 months between the change over from DLA to the new Personal Independence Payment (PIP) In that time, plans for PIP should be reconsidered with the views of disabled people properly taken into account.
ACT NOW supports the call for an adjournment debate so the views and opinions of people with disabilities can truly be listened to. Adults with autism are currently facing the prospect of two assessments both of which are not fit for purpose and certainly not relevant for a person with an autistic spectrum condition. Neither assessment was designed to reflect the complex needs of adults with autism.
ACT NOW has much evidence that the PIP assessment, recently trialed across the UK, was not designed for adults with autism, it seem the condition wasn't considered! We agree that the new PIP assessment is almost a duplicate of the Work Capability Assessment and we are extremely concerned that adults with autism should have to face the trauma of two assessments not designed in any way to reflect their condition.
We have evidence that any specialism in autism that the Work Programme Providers have is patchy and varies greatly from area to area.
ACT NOW believes that being able to communicate effectively is a basic human right. We are therefore doubling our efforts to make sure that as many MPs and members of the House of Lords as is possible are aware of our campaign. We are reiterating our call for every adult with autism to be offered, can access and is allowed to then use the services of an independent and suitably trained advocate when they find themselves having an assessment/reassessment.
There are other issues that we firmly believe need to be raised and acted upon as a matter of urgency. There are many adults with autism who will NOT have reports from health professionals who are able to provide supportive evidence about their condition after their DLA/PIP assessment if they are asked to do so.
Many adults have seen no one since leaving Children’s Services and in some areas they have no health services for adults to access unless they are at crisis point.
Who will support these adults if it becomes necessary for them to provide reports?
There is a dearth of specifically trained professionals who have the specialism required to understand autism and then write a comprehensive report about how autism impacts on the lives of the individual with the condition.
ACT NOW believes that this issue alone is causing grave concern to many adults who are living alone, isolated and unsupported in our communities. The wellbeing of these adults must not be overlooked. They have been neglected, ignored and ineligible for far too long already.
Lets ACT together!
Sunday, 15 January 2012
What a week!
The last 7 days have probably been the most intense, emotional, exasperating and in some ways euphoric that we have lived through since the ACT NOW Campaign started in July 2010. And it's not over yet...The issues that ACT NOW and every other disability campaign group have been campaigning about are now coming to a head as the Welfare Reform Bill makes its way towards the finishing line in the House of Lords.
This last week has left ACT NOW wondering if for the last 18 months we have been fighting a campaign on a cause that does not exist - why on earth would we wonder that you may ask?
When ACT NOW started we were extremely concerned that the cuts to budgets and the changes and reforms to benefits were going to have a catastrophic impact on the lives of thousands of people within the autism community. We rolled out our concerns and we have steadfastly campaigned in the 18 months since.
On Thursday Night, Newsnight gave air space to one of the authors of the Spartacus Report. Sue Marsh, who given the biased Newsnight reporting in favour of the Government, did what she was there to do, against the Minister for the Dept of Work and Pensions Chris Grayling.
After watching this interview, ACT NOW has been left wondering if we are in fact clueless as to what the real issues are within the Coalition Government’s Welfare Reform Bill.
Are we even right to have concerns about this Bill and why are we campaigning so ardently against it?
Chris Grayling made the following statement on Newsnight: "Let’s be clear about what we’re not doing. We are not taking away benefits from people who have no other income..."
He continued: “We are not taking away benefits from people who are not going to be able to work again. We are making changes for people who’ve got another income, or who’ve got thousands of pounds of savings in the bank...so that’s the principle of what we’re doing.”
Newsnight Presenter Sue Maitlis responded: “Sure and that was presumably understood pretty well by those in the Lords"?
It is not 'understood pretty well' by ACT NOW!
We have written to Chris Grayling many times, he has responded in writing every time and not once did he say to us that only people with 'thousands of pounds of savings in the bank' will lose their benefit or that only those with 'another income' will either.
Why is the Coalition Government not shouting this from the roof tops? Why do people need an assessment if the only way that you are going to lose benefit is if you have an alternative income or thousands of pounds in the bank? Surely looking at bank statements would show the source of an alternative income and would be the way to confirm entitlement?
We want to know what on earth Chris Grayling was talking about and why was such sloppy journalism allowed on an apparently neutral politics programme? We were almost speechless when we realised the paint job that was taking place on Newsnight - speechless but not entirely surprised. We would also like to contest what Mr. Grayling went on to say about the work programme, he stated:
"We’ve put in place specialist support to help people who’ve got the potential to return to work to do so’..."
This is not what ACT NOW is hearing from adults with autism (or their parents, carers or advocates) who are being placed on this programme - there is no 'specialist support' or at best, it's a postcode lottery.
Just last week a supporter of ACT NOW told us that a work programme provider has admitted to not fully understanding autism. As a result, an adult with autism is having to have a second interview because the adult has not fully understood the process, despite an advocate being present. The advocate will be allowed to attend for the second interview but once again, the adult with autism has to answer all of the questions without assistance. The same work programme provider has suggested the adult would be better off in a programme where staff understand autism better. Where does that leave this young person?
This is not an isolated case. We have had reports from our supporters across the UK telling us work programme providers have very little (if any) knowledge of autism.
The Government statistics rolled out after the DLA consultation did not tell the truth. The Spartacus Report has conclusively proven that and the truth was not discussed on Newsnight.
We were happy that finally the BBC and some other media groups are now talking about the Bill and it's shortcomings but it was at best severely bent and at worst it was yet another lie...
...a lie perpetrated by a Government who will not let a bunch of people, they deem to be not quite disabled enough, stop them from achieving their goals.
Lord Patel put it quite succinctly to Lord Freud: "If you are going to rob the poor to pay the rich, we have entered a different form of morality."
Here is Sue's blog post, with a reminder for everyone of the Conservative Manifesto Pledges on disability and care in 2010: Diary Of A Benefit Scrounger
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