Crippen's latest blog comment

Crippen addresses the latest legal action taken by Atos against disabled groups and individuals

Dave Lupton

aka Crippen - Disabled cartoonist

Anyone wishing to use any of my existing cartoons for their own web sites or publications are asked to make a donation to support my work with groups and organisations of disabled people. Please make your payment by sending a cheque to Dave Lupton, 17 Cawsam Gardens, Caversham, Reading RG4 5JE and marked on the back 'donation' - the amount you pay is discretionary. Thanks for your support.

Crippen's web site - http://www.crippencartoons.co.uk

Crippen's cartoon blog - http://crippencartoons.wordpress.com

Crippen's Disability Arts On Line blog - http://www.disabilityartsonline.org.uk/?unique_name=crippen-blog&offset=0

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Sibling risk of autism examined

Siblings of autistic children are nearly twice as likely to develop the disorder than was previously believed," The Independent has today reported. The newspaper says a new study has found that the brothers and sisters of children with autistic spectrum disorder (ASD) have nearly a 19% risk of being diagnosed with the condition at age three. Previous studies had suggested that the figure was somewhere between 3% and 14%.

These findings come from a study which followed the development of 600 children with an older sibling affected by the condition. It is reportedly the largest study to investigate this question so far. Another strength of the study is the fact that all the children were assessed in a thorough and standardised way by clinicians involved in the research, rather than just relying on diagnoses made when the children's symptoms were reported to their family doctor. However, this very thorough assessment may also mean that more children were diagnosed with ASD than would be diagnosed otherwise. This could be contributing to the higher rates found in this study than in other studies.

The study itself did not include a control group of infants who did not have an affected sibling, so it does not provide a direct comparison of the chances of developing the condition in children with affected and unaffected older siblings. However, this figure is likely to be higher in siblings of affected children than in the general population because genetic factors are already thought to contribute to the risk of developing ASD.

 

Where did the story come from?

The study was carried out by researchers from the University of California and other research centres in the US, Canada and Israel. It was funded by the US National Institutes of Health (NIH), the United States–Israel Binational Science Foundation, the Canadian Institute for Health Research, and the Autism Speaks research foundation.

The study was published in the peer-reviewed medical journal Pediatrics.

The Independent, Daily Mail and BBC News have reported this research. The Mail and BBC headlines summarise the results of this research clearly, with reference to the actual risk in children with affected siblings. However, The Independent's headline states that "siblings of children with autism more likely to develop condition", which suggests that the study compared children with an affected sibling against some other group, such as those with unaffected siblings. This study did not include a comparator group, but has instead solely quantified the likelihood of a child developing ASD if they have an older sibling with the condition. However, the main text of The Independent's article does explain the research clearly.

 

What kind of research was this?

This was a prospective, longitudinal study following the siblings (brothers and sisters) of children with autistic spectrum disorder (ASD), to determine how likely they were to develop the condition by the age of three.

The researchers report that ASD is more common in boys than girls, and that genetic factors are thought to play a critical role in whether a child is vulnerable to the condition. In conditions where genetics plays a role, siblings of people with the disorder are at greater risk of developing the disorder than those with no affected sibling. The researchers say that previous studies have found that children with an affected sibling have between a 3% and 14% risk of developing the condition themselves.

This type of study is appropriate for estimating the prevalence of the condition in the siblings of affected children. This can be compared with estimates of how common the condition is in the general population, to give an indication of whether children with an affected sibling are at greater risk. However, the study itself did not feature a control group to directly compare the ASD group against. Following a control group featuring similar infants with similarly-aged older siblings without the condition would allow us to compare the rates seen.

While we can compare the rates of autistic spectrum disorder seen in this study against other estimates, such as national averages, this may not give a clear impression of the difference in risk in children with and without an affected sibling. This is because all the children in the current study were assessed by expert clinicians to identify those with ASD, regardless of whether their parents reported that they had symptoms or not, something that does not happen in everyday clinical practice. This means that this study might therefore detect a greater proportion of ASD cases.

 

What did the research involve?

The researchers recruited 664 infants (aged up to 18 months) who had an older biological sibling with ASD. They went on to determine what proportion of these infants had developed ASD at the age of three.

The children were part of an international research initiative looking into the development of infants from the US and Canada with a high risk of ASD. The older siblings had to have been diagnosed with autistic disorder, Asperger's syndrome, or a pervasive developmental disorder not otherwise specified. Their diagnosis also had to be verified by the researchers. Children with an identified neurological or genetic cause for their ASD (such as fragile X syndrome) were excluded.

Most (99.1%) of the participants in this study were full biological siblings of the older child with ASD. The remainder were half siblings. Removing these half siblings from the analyses did not affect the results, so they were kept in. Only one infant from each family was included in the analyses.

In order to classify younger siblings as having ASD, the child had to score above a certain threshold level on a standard symptom assessment test called the Autism Diagnostic Observation Schedule. They also had to be diagnosed with autistic disorder or pervasive developmental disorder based on assessment by an expert clinician.

The researchers also recorded other characteristics of the child and their families, and checked whether these were related to their risk of developing ASD.

 

What were the basic results?

The researchers found that 18.7% of the children (132 children) with an older biological sibling with ASD had ASD at the age of three.

Among these younger siblings, boys were almost three times as likely to develop ASD as girls, with 26.2% of boys affected compared to just 9.1% of girls. Children with more than one sibling with ASD were twice as likely to develop ASD (32.2% affected) than those with only one affected sibling (13.5% affected).

A child's risk of developing ASD was not related to their age on entering the study nor to their older sibling's gender or severity of symptoms.

 

How did the researchers interpret the results?

The researchers concluded that the risk of a child getting ASD if they had an older sibling with the condition was higher than previously thought. They say that their study is the largest to address this question so far. This – together with the fact that they collected data prospectively – means that these estimates are more reliable than previous studies.

 

Conclusion

This study suggests that the risk of a child with a sibling with autistic spectrum disorder developing the condition themselves at age three is just under one in five (19%).

As the authors point out, there are some strengths to the study, including the relatively large sample. Another strength is the fact that all the children were assessed in a standard way by clinicians involved in the research, rather than relying solely on a diagnosis by their own physicians. However, this very thorough assessment may also mean that more children were diagnosed with ASD than would be diagnosed otherwise, which could be contributing to the higher rates found in this study than in other studies.

In addition, this study did not include a control group of infants who did not have an affected sibling. This means it cannot tell us how much more likely a child with an affected sibling is to have the condition than a child without an affected sibling. However, the chance of developing ASD if a brother or sister already has the condition is likely to be higher than in the general population of similarly aged children, as genetic factors are already thought to contribute to risk of developing ASD. This study does help to estimate the risk in children with affected siblings.

Links to the headlines

Siblings of children with autism more likely to develop condition. The Independent, August 15 2011

'One in five' risk of autism affecting a second child. Daily Mail, August 15 2011

Autism sibling risk 'higher than previously thought'. BBC News, August 15 2011

Links to the science

Ozonoff S, Young GS, Carter A et al. Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study. Pediatrics 2011, Published online August 15

NHS Choices

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An introduction to the Think Again Fund

In 2007 Stannah decided to launch an in-depth study into the way the over-50's feel about their lifetime achievements and their attitude to life at this stage. The results were quite revealing and proved to Stannah that they had an opportunity to make a difference.

The key findings of the research showed that a staggering 62% of older people living in Britain regretted not having pursued their dreams in their younger years with only 10% of women and 16% of men claiming they were actively pursuing their goals.

In response to the survey, Stannah Stairlifts launched the 'Think Again' Fund - a pot of money put aside by Stannah to give to one applicant every month for them to put towards achieving their lifelong dream.

In addition to the Fund creating opportunities for those who apply, it is hoped that it will go some way to changing the perceptions that many have of the older generation. Stannah hopes that the fund will allow the younger generations to better understand that being older does not mean that you stop wanting to live a fulfilled life or continuing to achieve goals such as sky diving or learning a musical instrument.

http://thinkagainfund.stannahstairlifts.co.uk/

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Government's "recruitment" farce

Crippen's take on the latest "recruitment" of a non-disabled civil servant for the role of Director of the Office for Disability Issues (ODI).

Read his latest blog for more information about this continued farce - http://www.disabilityartsonline.org.uk/crippen-blog?item=1011&itemoffset=1

Dave Lupton

aka Crippen - Disabled cartoonist

Crippen's web site - http://www.crippencartoons.co.uk

Crippen's cartoon blog - http://crippencartoons.wordpress.com

Crippen's Disability Arts On Line blog - http://www.disabilityartsonline.org.uk/?unique_name=crippen-blog&offset=0

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Billy Bragg

For more info about Crippen's latest cartoon, then visit the Billy Bragg Face Book page at - http://www.youtube.com/watch?v=mo7CRHkbMnk

:-)

Dave Lupton

aka Crippen - Disabled cartoonist


Crippen's web site - http://www.crippencartoons.co.uk

Crippen's cartoon blog - http://crippencartoons.wordpress.com

Crippen's Disability Arts On Line blog - http://www.disabilityartsonline.org.uk/?unique_name=crippen-blog&offset=0

Posted via email from Editor's posterous

Hate crimes against Britain's disabled on the rise

Disability related hate crime has increased by 75% in the UK as campaigners blame Britain's tabloid newspapers for stirring up hatred against disabled people because of the way they vilify people on welfare.

Charity groups in Britain say there is growing evidence that disabled people are increasingly the targets of abusive comments or aggressive behavior.

 

British charity "Scope" says that over the last two years, disabled people have reported a 50 percent increase in verbal abuse and intimidation on London's public transport.

 

Recently, the organization's chairwoman, Alice Maynard, who has a neuromuscular impairment and uses a wheelchair, admitted she was regularly sworn at when using the London Underground.

 

Other support groups have reported worse incidents. "When you hear stories of people being tipped out of a wheelchair.  That frankly beggars belief.  Why would anyone actually do that?" David Congdon from the charity Mencap told Deutsche Welle.

 

"Being spat at in the street, having things pushed through their letterbox.  All those sorts of awful things that go on far too often, we want to stop," he added.

 

"What we know from talking to people with a learning disability is that too many of their lives are destroyed by the constant harassment that goes on."  

 

Tabloids to blame?

 

Campaigners say Britain's tabloid press has played a role in aggravating hostility towards disabled people.

 

Even as public spending cuts have hit people on welfare hard, some tabloid newspapers in recent months have played up so-called disability benefit fraud. Some have even portrayed disabled people as "work shy" and as "spongers."

 

One story of a 37-year old claimant, who said she needed crutches to assist with walking but was later seen skydiving, was widely written about.

 

While campaigners say there is invariably fraud within the welfare system, they point out these types of stories are unfair on the majority of people with disabilities because they reinforce stereotypes and spark resentment against some of the most vulnerable people in society.

 

Signs of progress 
 

While newspapers may be amplifying prejudices that already exist, journalist Katharine Quarmby and author of the book "Scapegoat: Why We Are Failing Disabled People" thinks police forces are beginning to take the issue of disability-related hate crime more seriously.

 

"Four years ago, many police officers didn't even know that disability hate crime existed.  They certainly do now," Quarmby told Deutsche Welle.

 

"Most of them have to do training for it.  Prosecutors have to undertake mandatory training so they can apply the law and ask judges to enhance sentences."

In the last few years, the number of recorded cases in the UK has risen dramatically. The most recent figures, in 2009, show a 75 percent increase in one year.

Quarmby says much of that is the result of better reporting of the crimes. According to her, Britain now leads the world in identifying, prosecuting and challenging disability-related hate crimes.    

Victims of 'mate crime'

 

But there's still a long way to go. In 2007, one of Britain's worst cases of hate crime against disabled people made the headlines and sparked a huge public debate.

 

Fiona Pilkington, 38, killed herself and her disabled daughter Francecca Hardwick, 18, following 10 years of sustained abuse and harassment by a gang in Leicestershire.

  

In the case of Steven Hoskin from Cornwall in south-west England, the 38-year -old, who had profound learning difficulties, was befriended by five people who went on to torture him. They force fed him 70 painkillers and made him jump to his death from a 100-foot bridge.

 

"So many people with learning disabilities in particular are groomed, exploited and eventually attacked by people who they consider to be their friends," said Quarmby.

 

Quarmy has also written about 'Tuesday friends', where so-called buddies visit disabled people on the day their welfare check arrives in the post, encouraging them to part with most or all of their cash.

 

Other campaigners too are determined to ensure that hate crimes don't go unpunished.  

 

The charity Mencap has launched the 'Stand by Me' campaign to encourage even more disabled people to report hate crime. They've called on British police forces to continue to improve the way they respond to these sorts of attacks and how they handle the victims.

 

They say it's about time certain sections of the British public changed their attitudes towards the plight of disabled and learning disabled people.

 

Author: Nik Martin (jw)
Editor: Anke Rasper 

http://www.dw-world.de/dw/article/0,,15293695,00.html

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Buying A Mobility Product?

If your thinking of buying a piece of mobility equipment, such as mobility scooter, power chair or manual wheelchair. Or a 'daily living aid' such as a bathlift, adjustable bed or stairlift, here are are just a few easy ideas to help make sure you don't get taken for a ride when buying that scooter.

If you are buying off the internet.

Make sure you know who your buying from by checking to see that they show their full contact details on the site. (Company Name, Address and a land-line phone number).

See if they are a member of the British Healthcare Trades Association, either by looking for their logo,which looks like the one on the right, or by finding them on the BHTA's list of  members at www.bhta.net/find-a-bhta-member.aspx 

Please bear in mind though that not all healthcare suppliers are BHTA members. Not being a member does not mean that they are automatically bad, but its just something you should bear in mind when deciding where to buy from.

When paying for your purchase via the internet always use a credit card, or for smaller items you can sometimes use paypal.  All Credit Card payments made over the value of £100 are covered by section 75 of the consumer credit act, so if the company goes burst, fails to deliver or delivers faulty goods you can claim back your money from your credit card company.  For more about this, see this section on Moneysavingexpert.com: http://www.moneysavingexpert.com/shopping/section75-protect-your-purchases

Its important to emphasize, section 75 only applies to Credit cards Not Debit cards or cheques.  Debit cards are a form of instant payment where the money (if available) goes immediately from your bank account into theirs, rather like cash ... Cheques could be said to be a little safer as you do at least have a small window of opportunity where you could cancel the cheque before it is cashed. But that depends on you Bank's own policy and you should check with your local branch for information about that.


Paypal use a their own complaints procedure, please refer to their site for more details: www.paypal.co.uk

Make sure you know what your getting!

Sounds obvious perhaps, but don't just rely on the picture, check out the item description, ask questions and if the price seems to be good to be true?  Well you know what they say!

Sales people / Demonstrators

If you have arranged for a sales person to call on you in your home there are a few simple things you should do.

Nobody likes to consider or admit that could be vulnerable to high pressure sales, but the fact is regardless of how fit you are of how mentally alert you may feel,  its all to easy to find yourself in difficulty when dealing with slick sales people.

So whenever possible make sure that someone else, like a friend or relative, is present when the sales person calls.  If that isn't possible ask a friend, relative or neighbour to phone about half an hour after the appointment starts.  That phone call both gives you the opportunity to gather your thoughts and could also give you either an excuse to ask the sales person to leave or give a signal to the person who you asked to phone you that you need them to intervene.

Let me explain.  I have used this method myself for both sales people and dodgy dates ...

A friend rings my mobile after about half an hour of the sales person calling and asks if I'm okay, if everything is fine then I tell them that and explain to the quizzical sales person after the call that it was just a friend checking up on me.  If the sales person is genuine in their interest in your well-being then they shouldn't have a problem with a friend checking on you.

If you are in a situation where you feel pressured and you either need an excuse to get out or you need to be rescued, but feel you can't say that directly, then use a pre determined phrase. One of my favourites is "How's Uncle Bob".  My friend will then ask if I'm okay to which I will simply answer "yes" or "no" - they will then ask if I need rescuing, again a simple "yes" or "no". "Yes" means "Help - Come Now!", "No" means "I'm Okay, but check again in half an hour"

It seems rather convoluted, but its got me out of scrapes with both sales people and blind dates!

You can always offer tea.  Not only is it polite, but going off into the kitchen to make a cup of tea will give you a few moments to gather your thoughts.  If they don't want tea go and make one for yourself anyway, even if you then leave it to get cold.  Besides one of the high pressure sales tactics involves trying to wear you down, a cup of tea and biscuit will help keep your energy up.  If you find that the sales person follows you to kitchen and you still need a moment to yourself, make the tea then  pop to the loo, the can't follow you in there.

Its always difficult when it comes to discussing things like price, particularly for older people who maybe more reserved about these things.  But there are two really important questions you need to ask yourself before signing or agreeing to anything.

1) Does what I'm being offered do what I need?

2) Can I afford it?

If you have any doubts, don't sign or agree to anything and certainly do not hand over any money or financial details. At the end of the day, if the sales person represents a reputable bushiness, that is interested in your well-being and providing a good service, they should be prepared to come back another day. Don't feel embarrassed or pressured into making a decision 'then and there' which you are not happy about. You are the customer and just like buying from a shop, if you are not happy, don't buy.

Some less reputable salesman will rely on the 'obligation factor' to make a sale - Meaning that they are banking on your sense of guilt if you don't buy.  After all "they have come all this way" or they "have made a special effort just for you" .  No, remember you are under no obligation.

Some Golden Rules When Buying 

Here are some golden rules for when you are buying any sort of mobility or 'daily living' equipment.

Questions you need to ask yourself:
Does what I want to buy do what I need it to do? 
Am I being asked to buy something I don't want or need?
Is the company (or the person)  able to offer after sales help if something breaks or I change my mind?
Is it at a price I can afford?

If the answer to any of these questions is no or doubtful, don't buy.



What To Do If Something Goes Wrong

Goods sold over the internet (and TV), through a catalogue or directly to you in your own home are subject to a 7 day cooling off period.

For extensive details about that see this (very long) url leading UK Government web page about 'Distant Selling':
http://www.businesslink.gov.uk/bdotg/action/layer?=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES&=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES

In simple terms, if you buy anything through the methods described above, you have 7 days in which to change you mind. But you must tell the company you have changed you mind by letter, fax or Email. A phone call, while useful for finding out how to go about things is the first thing you should do, cancellation of an order can only be done in writing.

If you find a older relative or person with a disability has agreed to buy something as a result of high pressure sales tactics there are a number of things you should do.

Ring the company and just ask if they would be willing to cancel the order.
Write to the company and repeat your request to cancel the order and remind of their obligation to provide a cooling off period.

If after the initial phone call you feel that they are not willing to cancel the order ...

Contact your local trading standards office as soon as possible (your county council will have their details) and seek advice

If a payment was made with a credit card, ring the card company and ask their advice, they maybe able to halt the payment.

If a cheque was used, contact the cheque holders bank, the may be able to cancel the cheque.



In Conclusion

Choosing and buying any sort of equipment to help if you have a disability or you are an older person, is really complicated (even if you have been doing it for 20 years like me).  If you have any doubts at all you should ask your Occupational Therapist, Social Care Team or GP for advice before making any purchase.

.Despite the odd dodgy company, there are many decent companies out there whose main concern is providing good products and a good service. However they are still in the business to make money. And just like any big purchase, you must do your research and make sure you are happy before making any sort of commitment to buy.

George

Webmaster