ACT NOW re DLA and benefit change.

[Cat]

ACT NOW Campaign

 

Autism campaigners are working together to ‘ACT NOW!’ and have launched a petition which we intend to deliver personally to No 10 Downing Street.

 

Our aim is to underline to Her Majesty's Government the catastrophic affect that benefit cuts and the assessments that will begin in 2013 for those in receipt of Disability Living Allowance, Employment Support Allowance and other benefits, coupled together with the cuts across Local Authorities and Primary Care Trusts will have within the autism community, where some of the most vulnerable people in the UK can be found.

 

Parents, Carers and Autistic Adults (Adults with Autism) who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with the fall out. While we are not opposed to cuts per se and understand that cuts need to be made we want it to be clearly understand the sheer magnitude of the changes and how they are going to impact on a community that is already marginalised and discriminated against.

 

In 2008 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for provision how much of the money being spent is on crisis management? The cuts to budgets in Local Authorities and Primary Care Trusts are going to make it even harder for children and adults to meet the criteria and access provision. We fear that only the minimum that can be supplied to these children and adults will be what is supplied.

 

We are calling for urgent talks with Her Majesty's Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives.

 

We would like HMS Government to address and respond to our concerns. We want HMS Government to address and respond to our concerns.

 

ACT NOW concerns can be viewed on the 'About Us' Page

 

Ivan Corea http://www.ukautismfoundation.org/

Richard Exley Autism Consultancy Services

Larry Whybrow Gardiner http://www.parentadvocatestogether.org.uk/

Sandy Howarth Author http://www.linkedin.com/pub/dir/Sandy/Howarth/

Anna Kennedy http://www.annakennedyonline.com/

Carole Rutherford http://www.autism-in-mind.co.uk/

 

 

 

 

 

 

 

 

[zenemu]

I actually think what is needed here is no so much an objection to change but rather a complete shake up of the benefits system. Many people who are Autistic who are currently on DLA are likely to loose it or be forced to go to appeal which is no secret.

 

I would argue that some people who are on DLA (Autistic or Aspergers), perhaps shouldn't be on it if their condition is mild enough not to warrant specific care or mobility needs and I have come across several examples of this recently. Others, however should be on much more as their needs are greater. Equally I think that carers allowance is in desperate need of review and that the sum awarded should at the very least match minimum wage (or better), given that full time carers can't by definition work full time.

 

The criteria to qualify DLA are poorly suited to people with autism and other hidden disabilities and mental health issues. So perhaps it is time for a new approach.

 

The bottom line is quite simple here. A method needs to be implemented to ensure that people who don't need these benefits loose them, but not as a money saving exercise, that money should then be put towards increasing carer’s allowance. I admit, a single medical assessment is not the way to go about that and is a bad idea.

 

This is a small corner of a much larger debate outside of the world of autism. A lot of individuals are going to be effected by these changes and they all need due consideration. My partner for example (who as I have mentioned in another thread, happens to sit on the judicial tribunal for DLA and AA), is a wheelchair user. She has been since she was six years old and equally she will have to undergo the same assessment as will countless others with very disparate conditions.

 

I am unconvinced that attacking this one disability at a time is the way to go, I think that a more general ethos needs to come into play where those who absolutely need, benefit. Those who don’t need are given the support they need to not only work, but to improve the quality of there lives. Those who are simply cheating need to perform community service until they have paid the tax payer back. Regardless, a more unified approach is needed if it is going to have any sway, especially with a Conservative & Liberal government.

 

[JeanneA]

I have just emailed and have added my name and address.

[trekster]

Unfortunately im unable to help as i dont feel comfortable divulging my postal address online.

[justine1]

I actually think what is needed here is no so much an objection to change but rather a complete shake up of the benefits system. Many people who are Autistic who are currently on DLA are likely to loose it or be forced to go to appeal which is no secret.

 

I would argue that some people who are on DLA (Autistic or Aspergers), perhaps shouldn't be on it if their condition is mild enough not to warrant specific care or mobility needs and I have come across several examples of this recently. Others, however should be on much more as their needs are greater. Equally I think that carers allowance is in desperate need of review and that the sum awarded should at the very least match minimum wage (or better), given that full time carers can't by definition work full time.

 

The criteria to qualify DLA are poorly suited to people with autism and other hidden disabilities and mental health issues. So perhaps it is time for a new approach.

 

The bottom line is quite simple here. A method needs to be implemented to ensure that people who don't need these benefits loose them, but not as a money saving exercise, that money should then be put towards increasing carer’s allowance. I admit, a single medical assessment is not the way to go about that and is a bad idea.

 

This is a small corner of a much larger debate outside of the world of autism. A lot of individuals are going to be effected by these changes and they all need due consideration. My partner for example (who as I have mentioned in another thread, happens to sit on the judicial tribunal for DLA and AA), is a wheelchair user. She has been since she was six years old and equally she will have to undergo the same assessment as will countless others with very disparate conditions.

 

I am unconvinced that attacking this one disability at a time is the way to go, I think that a more general ethos needs to come into play where those who absolutely need, benefit. Those who don’t need are given the support they need to not only work, but to improve the quality of there lives. Those who are simply cheating need to perform community service until they have paid the tax payer back. Regardless, a more unified approach is needed if it is going to have any sway, especially with a Conservative & Liberal government.

I agree My brother has a more serious disability than my son,yesterday we were talking about blue badges/disabled parking.He was saying how it seems more than half the people that use the parking are obese and how he felt this was unacceptable.I went on to say that some people with ASD find it difficult to get a blue badge and some people even critisize them if they use disabled parking because they can visably walk.

 

My brother,who has got mobility problems,recently did a walk to raise money for his disability research,he feels only those that use a wheelchair should have blue badge and I have to agree 100% with him on that Disabled parkings are purposefully wider so that people can get in and out of their vehicles which again are usually wider.He has a blue badge which he says he is willing to give up if the law was made that only wheelchair uses have it and that someone could monitor this.

 

He also said elderly people should have their own parking bays like the relatively new mums and toddlers bays,so again they dont take up the few disabled bays available.

Okay,I know I have gone off topic here

My point is that there are many people that are disabled that do not agree with the way things are.Yesterday I watched a film about a severly autistic boy and again I thought if that family didnt get DLA and I did it just wouldnt seem fair.Yes I struggle but I chose to have Sam just the same as I chose my other three kids,so in reality I should support him on my own,even if it meant working harder to do so.Of course for me on my own this is not an entirely possible solution and DLA is helping us alot.I do think if he is older and needed DLA to survive it would be a different issue but I would certainly hope it wouldnt be a cop out not to work,I would want to see for myself that he needs that money and that he cannot support himself without it.

 

Sorry I havent signed the petition wish you luck.

[Cat]

We agree that fighting this one disability at a time is not necessarily the right way to go. We are talking to other groups of other disabled people who we are hoping we can join up with at some point. Other groups of disabled people are also being active and are also fighting their own corner. It is early days at the moment.

 

Sadly ony 15% of autistic adults are in full time employment at the moment as opposed to 44% of adults with other disabilities. This is not because these adults do not want to work. It is not easy for an autsitic adult to either gain employment or to keep it.

 

My own personal fear is that someone who does not know my adult autistic son and how his autism affects him will assess him and decided that he is fit for work. He rarely leaves the house and never alone. If we had to go to an appeal we would have no one to support us as he has seen no one about his autism since he was 16 years old. He is not alone.

 

I know that the NAS are very concerned about DLA at the moment.

 

Yes there has to be cuts but we also need to find out where the 28,2 billion pound that is being spent annually on autism is being spent. Only 18% of LAs were able to tell the National Audit Office what they were spending their money on for services for Low Funtioning Adults with only 10% being able to answer the question re High Functioning Adults.

 

Cat

[Shaunsmum]

,he feels only those that use a wheelchair should have blue badge and I have to agree 100% with him on that :

 

I don't agree that it should only be wheelchair users. My mum has a blue badge, she doesn't use a wheelchair but she has scoliosis, she's had it since she was 6 years old, she spent years in and out of hospital had several operations and has a scar that runs the length of her spine. The hospital broke both her hips when she was younger and her right hip never healed properly. She now has problems with her back and her hip. It gets worse as she gets older, she has even asked for an operation on her back which they wont do as it could leave her paralysed. They have told her she needs a hip replacement but they wont do it because she's only 51. It is though getting to the stage where her leg just goes numb and she has to quickly sit down else she falls over. It's at the stage now where she is too scared to go into town on her own. I was with her one day when this happened, she didn't fall because I was with her but she went grey, I thought she was having a heart attack. She has a walking stick which was given to her by physio. It will not be too far away in the future before I think she will end up in a wheelchair permanently. She receives the lifetime diasablement benefit (can't remember the proper name) but she too will have to have these new assessments. She can't work or look after her grandchildren.

 

I do agree about the fact that this should not be dealt with one disability at a time and I haven't signed the petition either.

 

 

Anne-Marie xxxx

 

[KezT]

I don't agree that it should only be wheelchair users. My mum has a blue badge, she doesn't use a wheelchair but she has scoliosis, she's had it since she was 6 years old, she spent years in and out of hospital had several operations and has a scar that runs the length of her spine. The hospital broke both her hips when she was younger and her right hip never healed properly. She now has problems with her back and her hip. It gets worse as she gets older, she has even asked for an operation on her back which they wont do as it could leave her paralysed. They have told her she needs a hip replacement but they wont do it because she's only 51. It is though getting to the stage where her leg just goes numb and she has to quickly sit down else she falls over. It's at the stage now where she is too scared to go into town on her own. I was with her one day when this happened, she didn't fall because I was with her but she went grey, I thought she was having a heart attack. She has a walking stick which was given to her by physio. It will not be too far away in the future before I think she will end up in a wheelchair permanently. She receives the lifetime diasablement benefit (can't remember the proper name) but she too will have to have these new assessments. She can't work or look after her grandchildren.

 

I do agree about the fact that this should not be dealt with one disability at a time and I haven't signed the petition either.

 

 

Anne-Marie xxxx

 

I know we're going off topic here but to say only wheelchair users should have a blue badge is completely missing the point of the scheme!

 

My dad is in a wheelchair, has been for 30 years, and for the past 20 he has only been able to use an electric one He really doesn't care where he parks - its just as easy for him to sit in it for 300 yards as 3 yards!

 

My husband has severe arthritis - it is really painful for him to walk, and he can not make it more than a short distance without the liklihood of collapsing. However, he is not in a wheelchair as that would make the problem worsen quicker! Yet the blue bage allows him to park close to where he needs to go and therefore participate in family life.

 

If you were going to take it away from one of them, it should go from my father!

[JsMum]

my email to act now was unsuccessfully sent.

 

 

[justine1]

I know we're going off topic here but to say only wheelchair users should have a blue badge is completely missing the point of the scheme!

 

My dad is in a wheelchair, has been for 30 years, and for the past 20 he has only been able to use an electric one He really doesn't care where he parks - its just as easy for him to sit in it for 300 yards as 3 yards!

 

My husband has severe arthritis - it is really painful for him to walk, and he can not make it more than a short distance without the liklihood of collapsing. However, he is not in a wheelchair as that would make the problem worsen quicker! Yet the blue bage allows him to park close to where he needs to go and therefore participate in family life.

 

If you were going to take it away from one of them, it should go from my father!

The main point I was making was about people with so called "disabilities"(obesity and being old) these should not be the case.My brother ,as I mentioned,has a severe disability and has alot of pain when walking(he basically only has one working leg)he cannot get through small spaces incl.average parking spaces(he also has lifetime award of higher rate care and higher rate mobility for DLA),but he is the one who made the comment not me.I just agree that people who can walk without trouble do not need a blue badge.

 

Hope thats clearer and didnt intend on offending anyone All the conditions/disabilities mentioned are REAL disabilities,old age and being obese are NOT!!!

[Kathryn]

A worthy campaign, but the front page needs proofreading or the grammatical errors will threaten to undermine its impact.

 

K x

[Shaunsmum]

Hope thats clearer and didnt intend on offending anyone All the conditions/disabilities mentioned are REAL disabilities,old age and being obese are NOT!!!

 

 

I agree with you here, old age and being obese are not disabilities but they can bring disabilities with them. My father-in-law is a pensioner, he walks with a stick and has a blue badge, he finds it extremely difficult to walk distances and that is why he was awarded a blue badge. I'm obese and although it's my own fault that I am obese (actually I'm morbidly obese) I am finding it extremely difficult to lose weight, I eat healthy and I have 2 dogs I walk daily. Although I wouldn't apply for a blue badge. The point I'm trying to make is that no one asks for their health problems and everyone has different health problems and there have been posts talking about discriminating against ASD/AS and I feel (whether intended or not) that there have been others discriminated against.

 

Also I don't want you to think that I was offended by what you said, everything I have typed is just my opinion (of which I have many lol)

 

I must apologise too if I've taken over the original post

 

Anne-Marie xxx

 

Just to add it's Severe disablement allowance my mum gets and will still have to go for another assessment (from my original post)

 

xxx

[trekster]

I don't agree that it should only be wheelchair users. My mum has a blue badge, she doesn't use a wheelchair but she has scoliosis, she's had it since she was 6 years old, she spent years in and out of hospital had several operations and has a scar that runs the length of her spine. The hospital broke both her hips when she was younger and her right hip never healed properly. She now has problems with her back and her hip. It gets worse as she gets older, she has even asked for an operation on her back which they wont do as it could leave her paralysed. They have told her she needs a hip replacement but they wont do it because she's only 51. It is though getting to the stage where her leg just goes numb and she has to quickly sit down else she falls over. It's at the stage now where she is too scared to go into town on her own. I was with her one day when this happened, she didn't fall because I was with her but she went grey, I thought she was having a heart attack. She has a walking stick which was given to her by physio. It will not be too far away in the future before I think she will end up in a wheelchair permanently. She receives the lifetime disablement benefit (can't remember the proper name) but she too will have to have these new assessments. She can't work or look after her grandchildren.

 

I do agree about the fact that this should not be dealt with one disability at a time and I haven't signed the petition either.

 

 

Anne-Marie xxxx

 

i agree with you, often chronic pain conditions are left untreated and unrecognised for years before diagnosis. DLA higher rate is awarded on the grounds of "hardly able to walk" or "walking can cause your condition to worsen" as well as for wheelchair users. Some folk have cognitive issues trying to find somewhere to park and remember where they parked. i know at least one person who has a blue badge on these grounds.

 

[trekster]

The main point I was making was about people with so called "disabilities"(obesity and being old) these should not be the case.My brother ,as I mentioned,has a severe disability and has alot of pain when walking(he basically only has one working leg)he cannot get through small spaces incl.average parking spaces(he also has lifetime award of higher rate care and higher rate mobility for DLA),but he is the one who made the comment not me.I just agree that people who can walk without trouble do not need a blue badge.

 

Hope thats clearer and didnt intend on offending anyone All the conditions/disabilities mentioned are REAL disabilities,old age and being obese are NOT!!!

 

Actually old age and being obese are real disabilities. Im neither but an autistic friend of mine had undiagnosed type 2 diabetes for a few years before diagnosis and severe arthritis. She is obese due to being unable to exercise as it causes pain.

 

Hypermobility syndrome can cause random dislocations, fatigue and pain also it is invisible since the person doesnt always appear to have problems walking.

 

How do you know they are walking without trouble? Others cannot tell im in pain or how much that is affecting me.

[trekster]

I agree with you here, old age and being obese are not disabilities but they can bring disabilities with them. My father-in-law is a pensioner, he walks with a stick and has a blue badge, he finds it extremely difficult to walk distances and that is why he was awarded a blue badge. I'm obese and although it's my own fault that I am obese (actually I'm morbidly obese) I am finding it extremely difficult to lose weight, I eat healthy and I have 2 dogs I walk daily. Although I wouldn't apply for a blue badge. The point I'm trying to make is that no one asks for their health problems and everyone has different health problems and there have been posts talking about discriminating against ASD/AS and I feel (whether intended or not) that there have been others discriminated against.

 

Also I don't want you to think that I was offended by what you said, everything I have typed is just my opinion (of which I have many lol)

 

I must apologise too if I've taken over the original post

 

Anne-Marie xxx

 

Just to add it's Severe disablement allowance my mum gets and will still have to go for another assessment (from my original post)

 

xxx

 

i get that (now discontinued for new claimants) benefit as well based on not having enough NI contributions at the time.