



Archive for June, 2011
Today, the High Court ruled that the London Borough of Hillingdon acted unlawfully when they served Steven Neary, a young man with autism, with a Deprivation of Liberty order. The NAS welcomes the ruling and believes it should serve to demonstrate that local authorities should apply deprivation of liberty safeguards appropriately and with care.
Carol Povey, NAS Director of the Centre for Autism, says,
In this case, we have seen the wrongful application of an important and complex area of the law. It led to Steven Neary being kept away from his home for nearly a year and his father, his main carer, being excluded from the decision making process. The purpose of the Deprivation of Liberty Safeguards is to prevent people who lack mental capacity from being deprived of their liberty unless it is in their best interests and necessary to protect them from harm. It is important to remember that, with the right support for families, people with autism, like Stephen, can live at home and in their communities.
She continues,
In order that these safeguards are properly imposed on individuals with autism in the future, support staff require appropriate autism-specific training in order to support people in the least restrictive way. The Deprivation of Liberty Safeguards should be imposed only in instances of absolute necessity.
Recent research by the Mental Health Alliance, of which the NAS is a member, found that this area of law was misunderstood by many local authorities. This case demonstrates that local authorities must ensure proper awareness of the law on deprivation of liberty.
Source:
http://www.autism.org.uk/news-and-events/news-from-the-nas/steven-neary-high-court-ruling.aspx
Related Articles
“Update on Steven Neary Case: Dad and Autistic Son Reunited After High Court Judgement”:
Published: June 09. 2011 4:00AM PST
Actor Colin Farrell recently disclosed that his 7-year-old son James has been diagnosed with Angelman Syndrome, a neurological disorder caused by a genetic defect. According to the Angelman Syndrome Foundation, the condition affects 1 in every 15,000 children born in the U.S.
The condition is most often diagnosed between the ages of 2 and 5, and is often misdiagnosed as autism or cerebral palsy. Children affected by the disorder often have developmental delays and cognitive disabilities, often with severe speech impairment. They have balance problems and jerky movements. Children with Angelman Syndrome typically have a happy, excitable demeanor and are frequently smiling and laughing, with hand-flapping movements. They also tend to have a high fascination with water and crinkly items, such as plastic or wrapping paper.
Physically, the children often have small heads that are flat in the back, protruding tongues and widely spaced teeth. Sleep problems are common and they can experience recurrent seizures. As the children age, they become less excitable and sleep improves, and they have a normal life expectancy. There is no cure or therapy for the condition itself, but the children can benefit from various physical, speech and behavioral therapies.
— Markian Hawryluk, The Bulletin
Source: Angelman Syndrome Foundation, National Library of Medicine
NEW YORK |
NEW YORK (Reuters Health) – There is no solid evidence to support screening toddlers for autism, a new study concludes.
It’s estimated that autism spectrum disorders, which range from mild Asperger’s Syndrome to severe mental retardation and social disability, affect nearly one percent of kids in the U.S., putting a significant burden on families and society at large.
Both the American Academy of Pediatrics and the U.S. Centers for Disease Control and Prevention encourage routine screening for the disorders.
But the new report, a review of the medical literature, suggests those recommendations are premature.
“We don’t have research evidence to show how well screening works and whether we do more good than harm,” Dr. Jan Willem Gorter, a pediatrician at McMaster University in Hamilton, Canada, told Reuters Health.
While many screening tests exist — usually based on simple questions about the child’s use of eye contact and gestures — none of them are very accurate, Gorter and colleagues report in the journal Pediatrics.
Often the tests will misdiagnose healthy kids, such as one recent test that yielded false positives a quarter of the time, or they will fail to detect autism.
“The potential burdens on families of receiving a misdiagnosis (either a false-positive or a false-negative) may be enormous,” the researchers write, “and there might be labeling effects that can be hard to remove.”
They found other reasons to avoid screening, too.
For instance, there is no cure for autism, and interventions to help the kids function better on a daily basis often have shaky underpinnings and cost a lot.
Such treatment programs may not be easily available either, the researchers note, adding that offering screening without providing helpful services would be “pointless, and almost certainly unethical.”
“The reality is there are already waitlists of up to a year, or over a year,” Gorter said.
At this point, he added, the best way to help children with autism is probably to make parents understand how their kids communicate and make sure they meet other children.
SOURCE: bit.ly/cxXOG Pediatrics, online June 13, 2011.
Posted: 06/12/11 02:05 PM ET
Kent Melville’s father was skeptical when his son first said that he wanted to use the profits from his successful summer lemonade stand to start his own soda company. Aaron Melville, who teaches business classes at a local college, did not believe his 9-year-old autistic son was ready to run his own business.
Kent was determined to do something to help others with autism, however, which inspired his father to reconsider. Aaron described on a Facebook page for the organization, why he decided to help his son start Kent’s Soda after initially encouraging him to wait until he was older.
Kent pondered that for a minute. He then looked at me and said “Dad, I have everything I need right now, but there are lots of other kids with autism that can’t do the things they want or need. I want to be able to help them get some of the things they want with the money we earn. Can’t we start now? I don’t want to wait.” I had never been prouder. With a tear of gratitude in my eye, I agreed.
Though he has enlisted the help of his parents, students at a local community college, and members of the faculty, The Caledonian Record describes how the young entrepreneur is taking charge of his business.
Kent has chosen the flavors himself, and they currently include root beer, orange, lemonade, raspberry limeade, grape, strawberry and cream soda. Kent plans to add an additional flavor each year. The first one will be root beer mixed with orange.
He has come up with a marketing plans that will include a giant root beer volcano, and rejects others ideas when he doesn’t agree with them.
Read in Full:
http://www.huffingtonpost.com/2011/06/12/kent-melville-autism_n_874488.html
ACTION ALERT:
What Does Community Mean To You? Let Medicaid Know!
Greetings! |
What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.
Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.
We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.
Here’s what you can do:
1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to: http://www.regulations.gov/#!submitComment;D=CMS-2009-0071-0302
2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=153
3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!
Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!
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Regards,
The Autistic Self Advocacy Network
Jun
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Individuality, Diversity, Equality, Achievement
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The reality life can get overwhelming at times and some us feel that overwhelm sooner than others. We feel we “should†be able to handle the overwhelm when it inserts itself into our lives, but because we aren’t handling it, then “there’s something wrong with us.†Now that we doubt our ability to handle the situation, we become more overwhelmed and the cycle continues. However, the fact remains, we’re overwhelmed.
From a mindfulness perspective, I might say to see if you can bring a kind attention to the feeling of overwhelm. Inquire into it as if it was the first time you ever noticed it, getting a sense of its shape, texture or depth. See what happens if you just allow it to be and notice what happens next instead of buying into the thought, “I can’t handle this.”
However, sometimes the overwhelm is too great and in my mind, the underpinnings of mindfulness is to figure out what the most skillful action is to take. Perhaps “being with†the overwhelm isn’t what is best in that moment for your stress reduction and well-being and instead we need to “take a break†from it in order to help stop the spiral.
Read in Full:
http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=43318&cn=117
Reviewed by John M. Grohol, Psy.D. on May 27, 2011
University of Montreal researchers say that the drug metyrapone reduces the brain’s ability to re-record the negative emotions associated with painful memories. In other words, bad memories are effectively blocked from being recalled or remembered.
The team’s study challenges the theory that memories cannot be modified once they are stored in the brain.
“Metyrapone is a drug that significantly decreases the levels of cortisol, a stress hormone that is involved in memory recall,†explained lead author Marie-France Marin, a doctoral student.
Manipulating cortisol close to the time of forming new memories can decrease the negative emotions that may be associated with them, the researchers said.
“The results show that when we decrease stress hormone levels at the time of recall of a negative event, we can impair the memory for this negative event with a long-lasting effect,†said Sonia Lupien, Ph.D., who directed the research.
Thirty-three men participated in the study, which involved learning a story composed of neutral and negative events.
Read in Full:
http://psychcentral.com/news/2011/05/27/drug-metyrapone-to-erase-bad-memories/26532.html
Reviewed by John M. Grohol, Psy.D. on June 1, 2011
Surprising new research from the University of Chicago suggests reduced sleep can lower testosterone levels in healthy young men.
While the study involved a very small sample, findings are consistent with emerging research that suggests low sleep duration and poor sleep quality can disrupt the endocrine, or hormonal, system, which is involved in metabolism, growth, tissue function and mood.
The study is found in the June 1 issue of the Journal of the American Medical Association (JAMA).
Investigators found that men who slept less than five hours a night for one week in a laboratory had significantly lower levels of testosterone than when they had a full night’s sleep.
Low testosterone has a host of negative consequences for young men, and not just in sexual behavior and reproduction. It is critical in building strength and muscle mass, and bone density.
“Low testosterone levels are associated with reduced well-being and vigor, which may also occur as a consequence of sleep loss†said researcher Eve Van Cauter, Ph.D.
According to experts, at least 15 percent of the adult working population in the U.S. gets less than 5 hours of sleep a night.
Read in Full:
http://psychcentral.com/news/2011/06/01/sleep-loss-lowers-testosterone/26603.html
ScienceDaily (June 2, 2011) — The protein MeCP2 is porridge to the finicky neuron. Like Goldilocks, the neuron or brain cell needs the protein in just the right amount. Girls born with dysfunctional MeCP2 (methyl-CpG-binding protein 2) develop Rett syndrome, a neurological disorder. Too much MeCP2 can cause spasticity or developmental delay with autism-like symptoms in boys.
Now, researchers at Baylor College of Medicine and Texas Children’s Hospital have found that the neuron needs a steady supply of this protein for its entire existence. A report on this research appears online in Science Express.
MeCP2 was found in 1999 in the laboratory of Dr. Huda Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at TCH and professor of neurology, neuroscience, pediatrics and molecular and human genetics at BCM and a Howard Hughes Medical Institute Investigator. A mutation in MeCP2 results in Rett syndrome, a neurological disorder that strikes mainly girls. Male fetuses born with the mutation (which results in dysfunctional protein) die before birth, but girls appear normal until they are between 6 and 18 months. Then they begin to regress and their growth slows. They develop abnormal hand motions such as wringing. Their crawling and walking regresses and they eventually lose the ability to speak or communicate. They exhibit some symptoms of autism.
Clearly, MeCP2 is critical to normal mental functioning, but a question remained. Do neurons need MeCP2 throughout life or would they be protected and work properly if MeCP2 is provided only early in life and then discontinued during adulthood?
Journal Reference:
- Christopher M. McGraw, Rodney C. Samaco, and Huda Y. Zoghbi. Adult Neural Function Requires MeCP2. Science, 2011; DOI: 10.1126/science.1206593
Read in Full:
http://www.sciencedaily.com/releases/2011/06/110602143204.htm
