 
A new document outlining progress on the forthcoming guidelines for diagnosing and managing autism in adults has been produced by the National Institute for Health and Clinical Excellence (NICE).
The NHS body, which works independently of the government, is hoping the final document will provide guidance for doctors and other clinicians.
According to the National Autistic Society, the guidelines have clear links to the new adult autism strategy in England and will help local areas develop services for people with the condition.
It added: “NICE are also looking for volunteers to help them write the actual guidance and want to make sure that they involve people with autism and parents or carers.”
The final guidelines are expected to be published on June 2012.
Last month, Paul Wehman, the editor-in-chief of the Journal of Vocational Rehabilitation (JVR), said the issues and challenges facing young people and adults with autism need to be addressed.
Source:Â http://www.craegmoor.co.uk/industry-news/article/19768204/nice-issues-new-autism-document/
 
Article Date: 12 May 2010So often the rare informs the common. Penn researchers investigating a regulatory protein involved in a rare genetic disease have shown that it may be related to epileptic and autistic symptoms in other more common neurological disorders.
A team of researchers from the University of Pennsylvania School of Medicine, led by Peter B. Crino, MD, PhD, associate professor of Neurology and director of the Penn Epilepsy Center, demonstrate how mutations in the STRAD-alpha gene can cause a disease called PMSE (polyhydramnios, megalencephaly, and symptomatic epilepsy) syndrome, found in a handful of Amish children. PMSE is characterized by an abnormally large brain, cognitive disability, and severe, treatment-resistant epilepsy.
Specifically, in an animal model, they found that the lack of the STRAD-alpha protein due to genetic mutations causes activation of the signaling pathway involving another protein called mTOR. In humans, this in turn may promote abnormal cell growth and cognitive problems in the developing brains of children. STRAD-alpha and mTOR proteins are part of a complex molecular network implicated in other, more common neurological disorders, many of which have autism-like symptoms as a component.
“The identification of a new gene that regulates mTOR provides fascinating insights into how mTOR pathway dysfunction may be associated with neurological disorders,” says Crino. “Each new mTOR regulatory protein that is identified provides a new possible therapeutic target for drug development and treatment.”
Read in Full:Â http://www.medilexicon.com/medicalnews.php?newsid=188384
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Article Date: 12 May 2010So often the rare informs the common. Penn researchers investigating a regulatory protein involved in a rare genetic disease have shown that it may be related to epileptic and autistic symptoms in other more common neurological disorders.
A team of researchers from the University of Pennsylvania School of Medicine, led by Peter B. Crino, MD, PhD, associate professor of Neurology and director of the Penn Epilepsy Center, demonstrate how mutations in the STRAD-alpha gene can cause a disease called PMSE (polyhydramnios, megalencephaly, and symptomatic epilepsy) syndrome, found in a handful of Amish children. PMSE is characterized by an abnormally large brain, cognitive disability, and severe, treatment-resistant epilepsy.
Specifically, in an animal model, they found that the lack of the STRAD-alpha protein due to genetic mutations causes activation of the signaling pathway involving another protein called mTOR. In humans, this in turn may promote abnormal cell growth and cognitive problems in the developing brains of children. STRAD-alpha and mTOR proteins are part of a complex molecular network implicated in other, more common neurological disorders, many of which have autism-like symptoms as a component.
“The identification of a new gene that regulates mTOR provides fascinating insights into how mTOR pathway dysfunction may be associated with neurological disorders,” says Crino. “Each new mTOR regulatory protein that is identified provides a new possible therapeutic target for drug development and treatment.”
Read in Full:Â http://www.medilexicon.com/medicalnews.php?newsid=188384
 
(SkyNewswire.com)— Schools are shirking Braille for more tech-savvy tools to assist blind students, such as text-to-speech software and audio-enabled ebook readers. But will the loss of Braille detrimentally affect the blind? In the mid-20th century, the use of Braille was enormously popular: “schools for the blind” helped children learn Braille, the raised dots appeared in restaurants and elevators and hospitals, and a new culture of respect for this handicap became the norm. Times have changed. According to an article in Canadian magazine Macleans, “overstretched school budgets and the ever-evolving portable audio book” are killing Braille.
The article cites a sobering fact: In the 1950s around half of all blind children learned Braille, according to the U.S. National Federation of the Blind. Today, that number has dropped to 10 percent (Canadian numbers are comparable). NFB director Mark Riccobono is quoted as saying: “If only 10 per cent of sighted children were being taught [to read] that would be considered a crisis.†Braille has fallen off the radar in schools due to tight budgets. “New technology is cheaper than hiring a Braille teacher,” the article states. Audio books reading text are useful for many children, and text-to-speech software enable Web surfers to “hear” what is being presented on many sites.
Gadgets such as the iPad could also allow users to listen to ebooks or articles, depending on the app downloaded. But ignoring Braille could have serious consequences. A study found that blind students who’d been taught Braille early in their childhood scored about the same as sighted students on a standardized test measuring reading comprehension — 61 versus 62 percent. For those with zero Braille training, that score fell to an average of 38 percent. The study’s author wrote: “Low-vision kids need to be taught Braille. Early Braille education is crucial to literacy, and literacy is crucial to employment.” The same researcher came to another conclusion relating to Braille: 77 percent of non-Braille users were unemployed. But for those who knew Braille, unemployment figures hovered around 56 percent. Among those whose Braille knowledge was “extensive,†most were working.
Read in Full:Â http://www.skynewswire.com/modules/news/article.php?storyid=16351
Â
(SkyNewswire.com)— Schools are shirking Braille for more tech-savvy tools to assist blind students, such as text-to-speech software and audio-enabled ebook readers. But will the loss of Braille detrimentally affect the blind? In the mid-20th century, the use of Braille was enormously popular: “schools for the blind” helped children learn Braille, the raised dots appeared in restaurants and elevators and hospitals, and a new culture of respect for this handicap became the norm. Times have changed. According to an article in Canadian magazine Macleans, “overstretched school budgets and the ever-evolving portable audio book” are killing Braille.
The article cites a sobering fact: In the 1950s around half of all blind children learned Braille, according to the U.S. National Federation of the Blind. Today, that number has dropped to 10 percent (Canadian numbers are comparable). NFB director Mark Riccobono is quoted as saying: “If only 10 per cent of sighted children were being taught [to read] that would be considered a crisis.†Braille has fallen off the radar in schools due to tight budgets. “New technology is cheaper than hiring a Braille teacher,” the article states. Audio books reading text are useful for many children, and text-to-speech software enable Web surfers to “hear” what is being presented on many sites.
Gadgets such as the iPad could also allow users to listen to ebooks or articles, depending on the app downloaded. But ignoring Braille could have serious consequences. A study found that blind students who’d been taught Braille early in their childhood scored about the same as sighted students on a standardized test measuring reading comprehension — 61 versus 62 percent. For those with zero Braille training, that score fell to an average of 38 percent. The study’s author wrote: “Low-vision kids need to be taught Braille. Early Braille education is crucial to literacy, and literacy is crucial to employment.” The same researcher came to another conclusion relating to Braille: 77 percent of non-Braille users were unemployed. But for those who knew Braille, unemployment figures hovered around 56 percent. Among those whose Braille knowledge was “extensive,†most were working.
Read in Full:Â http://www.skynewswire.com/modules/news/article.php?storyid=16351
 
Parliament House, Canberra, Australia
Federal Budget
Summary
The 2010-11 budget is one that reflects the difficult economic circumstances Australia has found itself in since the global financial crisis began in 2008.
It has been designed to reduce Australia’s net debt, to encourage savings and superannuation and support small business.
There are also some initiatives that will improve the lives of people with disability. These build on the initiatives we have announced previously, such as the pension reforms and the boost in funding through the National Disability Agreement.
Some highlights include:
- New funding of $520,000 to involve people with disability, their families and carers in the Productivity Commission’s landmark inquiry into long-term care and support
- Reforms to Special Disability Trusts to allow greater flexibility in what trusts can pay for and allowing beneficiaries to work up to 7 hours per week. This should lead to a 20 per cent rise in the take-up of Special Disability Trusts
- Changes to the Disability Support Pension to help return people with disability to the workforce, and maintain a safety-net for those who genuinely need it
- An extra $14.9 million to the Australian Paralympic Committee’s High Performance Program and $1million to ensure the 2012 London Paralympics is broadcast in Australia
 
Employment Services
The budget also includes two new measures to improve employment support for people with disability, starting from July 2010.
Firstly, young people with disability who have just left school or who are moving from a transition to work program will have streamlined entry into Disability Employment Services – eliminating the need for unnecessary assessments.
They will also receive the highest level of Employment Support funding available.
Secondly, Disability Employment Services providers will receive additional support to work with school leavers and other jobseekers with moderate intellectual disability.
This is a targeted measure aimed at highly vulnerable jobseekers linked to a sustainable goal for employment of at least 15 hours per week.
Â
2010-11 Disability funding
Overall the 2010-11 budget contains disability measures totalling more than $20 billion.
This includes:
- $12.9 billion on the Disability Support Pension
- $5.1 billion on payments to carers (majority to carers of people with disability)
- $310 million on Australian Disability Enterprises
- $14 million on young carers
- $1.2 billion on improved Disability Employment Services
- $1.04 billion in payments to States and Territories through the National Disability Agreement
There is still a lot more to be done in disability, but more is on the way. The National Disability Strategy, to be released before the end of the year, will be a major step forward in removing many of the barriers that are still faced by people with disability.
Â
Productivity Commission consultations
The Productivity Commission inquiry into a disability insurance scheme is underway, with 14 submissions received already, an issues paper about to be released within the next few weeks, and consultations to begin in June.
We want as many people as possible to participate in the consultations. In fact, we’ve allocated $520,000 in grants to help people get to the public hearings.
I’m a great supporter of the concept of an insurance scheme, and I know many within the disability sector are as well. This inquiry will tell us what kind of insurance scheme is possible in Australia, and how it could be set up, and I would urge everyone with an interest to make a submission.
Review of schooling
A new review of school funding will consider the best way to meet the costs of a range of factors, including disability, on educational outcomes.
The Minister for Education, Julia Gillard, released the draft terms of reference and a discussion paper on 30 April. The education sector is providing feedback on the terms of reference throughout May. Once the terms of reference are finalised, everyone will have the opportunity to contribute to the review.
Good News Week apologises for autism ‘jokes’
Some recent poor-taste humour on TV’s Good News Week demonstrates two things: firstly, that some comedians still think it’s ok to make jokes about vulnerable, powerless people. And secondly, that the disability community has the power to influence and educate the mainstream media. Within 24 hours of the show going to air, Channel 10 had issued an apology.
Special Olympics Australia Games
Over 700 athletes and hundreds of coaches, volunteers and supporters descended on Adelaide for the Australian Special Olympic Games on April 19-24. Along with Minister for Sport, Kate Ellis, I had the opportunity to speak at the opening, which was a great privilege. People with a disability shouldn’t have to miss out on the joy and the camaraderie of sport, and events like this help the community see the person for their accomplishments, not their disability. The Special Olympics relies on the support of many volunteers, and I would encourage anyone who is interested to find out more about how to get involved.
Video montage from the ceremony
National Disability Summit
Attendees at the National Disability Summit in Melbourne on 29 and 30 April displayed plenty of energy and commitment to change. For those of you who missed it, don’t despair – there will be many more opportunities to discuss disability policy issues, particularly with the Productivity Commission consultations coming up. I was kindly given an extended timeslot for my opening speech, which let me lay out a few of my thoughts on what needs to happen, and why I think we need a new approach to care and support for people with disability in Australia.
Latest media releases
Latest speeches & transcripts
- 1 May 2010 – Marysville Primary School Opening
- 29 April 2010 – Opening of Vision Australia building
- 29 April 2010 – Opening of National Disability Summit in Melbourne
- 27 April 2010 – Transcript, 7.30 Report story on individualised funding
- 23 April 2010 – National Deafness Summit in Sydney
- 22 April 2010 – Launching National Indigenous Disability Network
- 19 April 2010 – Transcript, ABC Adelaide, Special Olympics
- 15 April 2010 – Transcript, ABC Radio Darwin, Disability Insurance Scheme
Â
Parliament House, Canberra, Australia
Federal Budget
Summary
The 2010-11 budget is one that reflects the difficult economic circumstances Australia has found itself in since the global financial crisis began in 2008.
It has been designed to reduce Australia’s net debt, to encourage savings and superannuation and support small business.
There are also some initiatives that will improve the lives of people with disability. These build on the initiatives we have announced previously, such as the pension reforms and the boost in funding through the National Disability Agreement.
Some highlights include:
- New funding of $520,000 to involve people with disability, their families and carers in the Productivity Commission’s landmark inquiry into long-term care and support
- Reforms to Special Disability Trusts to allow greater flexibility in what trusts can pay for and allowing beneficiaries to work up to 7 hours per week. This should lead to a 20 per cent rise in the take-up of Special Disability Trusts
- Changes to the Disability Support Pension to help return people with disability to the workforce, and maintain a safety-net for those who genuinely need it
- An extra $14.9 million to the Australian Paralympic Committee’s High Performance Program and $1million to ensure the 2012 London Paralympics is broadcast in Australia
Â
Employment Services
The budget also includes two new measures to improve employment support for people with disability, starting from July 2010.
Firstly, young people with disability who have just left school or who are moving from a transition to work program will have streamlined entry into Disability Employment Services – eliminating the need for unnecessary assessments.
They will also receive the highest level of Employment Support funding available.
Secondly, Disability Employment Services providers will receive additional support to work with school leavers and other jobseekers with moderate intellectual disability.
This is a targeted measure aimed at highly vulnerable jobseekers linked to a sustainable goal for employment of at least 15 hours per week.
Â
2010-11 Disability funding
Overall the 2010-11 budget contains disability measures totalling more than $20 billion.
This includes:
- $12.9 billion on the Disability Support Pension
- $5.1 billion on payments to carers (majority to carers of people with disability)
- $310 million on Australian Disability Enterprises
- $14 million on young carers
- $1.2 billion on improved Disability Employment Services
- $1.04 billion in payments to States and Territories through the National Disability Agreement
There is still a lot more to be done in disability, but more is on the way. The National Disability Strategy, to be released before the end of the year, will be a major step forward in removing many of the barriers that are still faced by people with disability.
Â
Productivity Commission consultations
The Productivity Commission inquiry into a disability insurance scheme is underway, with 14 submissions received already, an issues paper about to be released within the next few weeks, and consultations to begin in June.
We want as many people as possible to participate in the consultations. In fact, we’ve allocated $520,000 in grants to help people get to the public hearings.
I’m a great supporter of the concept of an insurance scheme, and I know many within the disability sector are as well. This inquiry will tell us what kind of insurance scheme is possible in Australia, and how it could be set up, and I would urge everyone with an interest to make a submission.
Review of schooling
A new review of school funding will consider the best way to meet the costs of a range of factors, including disability, on educational outcomes.
The Minister for Education, Julia Gillard, released the draft terms of reference and a discussion paper on 30 April. The education sector is providing feedback on the terms of reference throughout May. Once the terms of reference are finalised, everyone will have the opportunity to contribute to the review.
Good News Week apologises for autism ‘jokes’
Some recent poor-taste humour on TV’s Good News Week demonstrates two things: firstly, that some comedians still think it’s ok to make jokes about vulnerable, powerless people. And secondly, that the disability community has the power to influence and educate the mainstream media. Within 24 hours of the show going to air, Channel 10 had issued an apology.
Special Olympics Australia Games
Over 700 athletes and hundreds of coaches, volunteers and supporters descended on Adelaide for the Australian Special Olympic Games on April 19-24. Along with Minister for Sport, Kate Ellis, I had the opportunity to speak at the opening, which was a great privilege. People with a disability shouldn’t have to miss out on the joy and the camaraderie of sport, and events like this help the community see the person for their accomplishments, not their disability. The Special Olympics relies on the support of many volunteers, and I would encourage anyone who is interested to find out more about how to get involved.
Video montage from the ceremony
National Disability Summit
Attendees at the National Disability Summit in Melbourne on 29 and 30 April displayed plenty of energy and commitment to change. For those of you who missed it, don’t despair – there will be many more opportunities to discuss disability policy issues, particularly with the Productivity Commission consultations coming up. I was kindly given an extended timeslot for my opening speech, which let me lay out a few of my thoughts on what needs to happen, and why I think we need a new approach to care and support for people with disability in Australia.
Latest media releases
Latest speeches & transcripts
- 1 May 2010 – Marysville Primary School Opening
- 29 April 2010 – Opening of Vision Australia building
- 29 April 2010 – Opening of National Disability Summit in Melbourne
- 27 April 2010 – Transcript, 7.30 Report story on individualised funding
- 23 April 2010 – National Deafness Summit in Sydney
- 22 April 2010 – Launching National Indigenous Disability Network
- 19 April 2010 – Transcript, ABC Adelaide, Special Olympics
- 15 April 2010 – Transcript, ABC Radio Darwin, Disability Insurance Scheme
Jan
22
 
May 10, 2010
NPR has an interesting interview on the phenomenon of compulsive hoarding where people will be almost unable to throw out used items and will collect mountains of clutter in their houses to the point where they can no longer see the walls.
The discussion is with psychologists and hoarding researchers Randy Frost and Gail Steketee and has lots of novel insights on a recognised but not well-understood behaviour.
I was struck by the bit where the interviewer highlights that lots of hoarders collect newspapers and Frost replies that “we think it’s related to a sense of wanting to acquire and preserve opportunities”. They also discuss the interesting concept of ‘clutter blindness’.
Read in Full:Â http://www.mindhacks.com/blog/2010/05/clutter_blindness.html