Wednesday, December 23, 2015

BLOOM media roundup

Looking for a read or video that will make you think? Check out these disability, health and parenting stories we've collected recently. If we missed a good one, please post the link in the comments.

Parents of a disabled child have to save for three The Globe and Mail
According to a University of Calgary study, 24-7 support for an adult with autism or other disability costs over $158,000 a year, and has been underestimated.

'What we have to do is find the places of hope' The Globe and Mail
Jean Vanier, founder of L'Arche communities for adults with intellectual disabilities: 'The more we lose, the more we come to the reality of what it is to be human.' 

Teen's death raises questions about secrecy surrounding kids in care The Toronto Star
A teen with autism wanted to go for a bike ride. The group home said they were going fishing. The teen acted out, was restrained and later died. Ontario's provincial advocate for children and youth only heard about the death when a reporter called him. "'It's stunning to me how these children...are rendered invisible while they are alive and invisible in their death,' said Irwin Elman, Ontario's independent advocate for children and youth."  

Unrestrained Pro Publica
A horrifying report on the daily use of physical restraints and two preventable deaths in an American for-profit residential program operating in four states for youth with severe developmental disabilities. “Many complaints have centred around the company’s aggressive use of mechanical restraints, such as leather cuffs, chairs with straps, and a wrap mat akin to a full-body straight-jacket. Such tactics, records show, have resulted in broken arms, collarbones and jaws, knocked-out teeth and cuts needing stitches.” Most recently a 14-year-old girl died after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.

Why do you never see a Lego mini-figure with a disability? The Guardian
"There is irony in the fact that toy shops are legally bound to consider the access of their disabled customers, while the products inside, created by huge companies that profit from the entertainment and education of our children, have no legal duty to consider how they represent disabled children and can therefore continue to culturally marginalize them."

The meddling masters of our high-cost health care The Globe and Mail
André Picard: "All told, Ottawa, the provinces and territories spend about $6.5 billion a year on the administration of the [Canadian] health system, and that is just the cost of running ministries of health and regional health authorities, not the administration within hospitals and other programs."

When hospital paperwork crowds out hospital care The New York Times 
Increasingly nurses are evaluated on how well they track a patient electronically, as opposed to the actual care they are providing.

Video: The teenager left paralyzed by one tiny mistake The Guardian
After a routine surgery, nurses gave this British teen fluids through an unclean tube that had been used for anesthetic. The extra anesthesia caused a cardiac arrest. 

NHS trust 'failed to investigate hundreds of deaths' BBC
Less than 1 per cent of 337 unexpected deaths of patients with intellectual disabilities were investigated over a four-year period by Southern Health Trust in Britain.

Death and sandwiches The New York Times
Noting how often medicine forces doctors to think when they want to cry, a resident physician says: "Dampening our emotion response, then, can help free our analytical minds to more effectively act, advise, cut, diagnose and treat, often under conditions of great uncertainty."  

The missing generation Spectrum
Left to languish in psychiatric institutions or drugged for disorders they never had, many older adults with autism were neglected or forgotten for decades. Efforts to help them are finally underway. 

I'm not broken The Washington Post

What this Washington reporter with autism wants you to understand.

Audio: What happened to your face? CBC Radio The Doc Project
Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.

Yearbook puts special needs students in 'short bus' on last pages WPXI-TV
Child's grandmother looks for his picture in his yearbook but it's not on the page with his classmates. Instead, it's been photoshopped into a yellow bus with other special-needs students in the back.

The disability experience Bad Cripple
Syracuse University professor Bill Peace: "Why is the social life of 'crippled' people so different from those who ambulate on two feet?"

Video: The enchanting music of sign language Ted Talks
Music can be seen and felt says deaf artist.

Lonely people's white blood cells less suited to fighting infection, study says The Independent
This study could help explain why people suffering from social isolation are 14 per cent more likely to die early compared to people who are not lonely.