GARRISON, N.Y. -- Should parents be able to use medical means to restrict the growth of profoundly disabled children to make them easier to care for at home?
A working group convened to discuss the ethical and policy considerations of "growth attenuation" proposes some guidelines in an article in the Hastings Center Report. Personal essays – including those of parents whose children cannot walk or speak -- accompany the article
Growth attenuation is the use of estrogen supplements to restrict a child's growth. Debate has raged since 2006, when the first case of the procedure came to light involving Ashley (pictured in 2000), a 6-year-old girl with profound developmental disabilities who underwent growth attenuation in Seattle Children's Hospital at the request of her parents.
The justification was that growth attenuation would enable Ashley's parents to more easily move her, dress her, and involve her in family gatherings. But the intervention drew strong criticisms, particularly from disability rights and family support groups, who compared it to involuntary sterilization and other horrific treatments inflicted on disabled people throughout history, ostensibly for both individual and social benefit.
The Seattle Growth Attenuation and Ethics Working Group consisted of 20 people, including Erik Parens, senior research scholar at The Hastings Center, as well as pediatricians, lawyers, and philosophers with diverse perspectives and experiences on disability issues. A few were directly involved in the Ashley case, and nearly half either have severely disabled family members or are severely disabled themselves.
The group could not reach consensus, but it did reach a compromise: "growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree."
The group stressed the importance of having safeguards in place, such as eligibility criteria, a thorough decision-making process, and the involvement of ethics consultants or committees. Growth attenuation should be considered only for children who are non-ambulatory and have persistent, profound developmental disabilities – about 4,000 such children are born each year in the United States. The decision-making process should begin with a competent evaluation of the child's condition by general pediatricians and various specialists, who can also assess the prospects for improvement.
In addition, clinicians should give parents information about the anticipated benefits and risks to the child, and about alternative options for including the child in family activities. As part of the information-gathering process, the group agreed "that parents should be given the opportunity to talk with other parents of profoundly disabled children in order to dispel any myths or assumptions about what life with a maturing child with profound developmental disabilities would be like."
Tuesday, November 30, 2010
Hastings Center. Thanks to Joan for the tip.
Posted by BA Haller at 7:08 PM
The most immediately noticeable thing about Kalyn Heffernan (pictured) is that she's in a wheelchair. What takes a little more time to absorb and appreciate is that the petite Irish woman in the Timbaland boots and paint-covered electric chair (she's also a sometime graffiti artist) fashions herself as the real deal on the microphone and is revolutionizing the image of the female rapper.
The frontwoman for hip-hop outfit Wheelchair Sports Camp (along with DJ Whitelabel, Isaac on live drums and Abi, who plays the Saxophone), Heffernan does not come from a typical hip-hop background. Diagnosed with Osteogenesis Imperfecta (OI) as an infant, Heffernan has been in a wheelchair her whole life.
Undeterred, however, she has led her life with a feisty spirit for just as long. She has "crip life" tattooed on her stomach, which is as much a throw to Tupac Shakur's "Thug Life" tat as it is to her existence in the handicap community. Heffernan makes no excuses and pulls no punches. She is, at the core, a rapper first and foremost. She uses her rhymes and affliction together in a way that challenges the status quo.
The Wheelchair Sports Camp album The Mainstream Cannot Spearhead Change is not all full of warm stories about overcoming trials and tribulations; rather, Heffernan uses humor to offer thoughtful accounts of her experiences. We caught up with Heffernan recently and chopped it up with her over breakfast about everything from her life as a "crip," as she puts it, to her determination to make things happen on her terms.
Westword: So, who is Kalyn Heffernan?
Kalyn Heffernan: Well, you know, I'm a crip. I was born a crip.
Really? Like a gang member?
[laughs] No, I mean a cripple, but I do have "crip life" tatted on my stomach. It's kind of one of those uncomfortable things that took me a while to embrace. It wasn't probably until middle school when I became really comfortable with myself and would crack a midget joke or a handicap joke at myself. Before that, I was really affected by anyone who said "midget" instead of "little person." There's not enough time to be mad at everyone, so I figure it's easier to laugh at everyone.
To be specific, what is your affliction?
Osteogenesis Imperfecta. I was born with it. Neither of my parents have it. It's never shown anywhere in my family. I have brittle bones. I'm not as brittle as I used to be. As a baby, I'd break in my crib. My mom didn't know that I had this disability when I was born, so she had a natural birth. By the time I was six months old, she took me to the hospital because we were at breakfast and I moved my arm, and she heard a snap, and I started crying. She took me to the hospital, and we did X-rays, and sure enough, there were 25 fractures. I was in the hospital for eighteen hours, and they finally diagnosed me. That's basically it: I have brittle bones.
And that's why you're in a wheelchair?
Yeah, there are people who are different sizes with OI that can walk and are regular size, and there are people who are half my size, if not smaller, and are also super-brittle. I think I have it pretty good. It helps if I don't get drunk and fall out of my chair.
How old are you?
I'm 23. Through OI, I have scoliosis as well. It's something that's very common with this disability. My teeth are brittle, but I've met kids who eat a piece of toast and their teeth crumble.
So do you have one of those "hip-hop saved my life" stories?
Yes and no. My parents always listened to the Grateful Dead and that kind of stuff, and one morning me and my dad were driving down the freeway in California, where I grew up -- I moved back here when I was nine -- and I ran into Power 106, and I started hearing hip-hop and wanting to hear this station. It was like some bad song, and he said, "Turn that shit off."
Ever since then, I've been like addicted to hip-hop. I really got into TLC, too. They are the "hip-hop saved my life" example. They were just these three awesome women. Left Eye always had the dopest rhymes, plus they had catchy hooks and condoms all over the place. I was like five or seven listening to "Oooh on the TLC Tip" and singing about safe sex, not knowing what it was. I also got into Salt-n-Pepa a lot.
So I see the paint on your arms and all over your wheelchair -- you're a painter, too?
My senior year of college, I had to take an art class, and it was drawing. At the end of the semester, we learned how to paint and stretch canvases, so I painted a police shirt. I painted in the N.W.A. sign so that it said "Fuck the police." It's good.
What did you do with it?
It was actually the shirt I was wearing when I fell outta my chair and broke my head. I was bleeding outta my ears and they had to cut it off of me, so I was like, "Oh man, I love this shirt!" That's what I decided to do with it.
When you decided you wanted to become an MC, was it before or after you became more acquainted with your disability?
If was definitely before. I started rapping when I was twelve, in the sixth grade. I listened to all mainstream. It wasn't until senior year of high school and freshman year of college that I became acclimated with underground and conscious hip-hop, even the old-school stuff.
I knew about TLC and Bone Thugs-N-Harmony and stuff like that, but I was really educated on KRS ONE and things like that. I started rapping, and it was more of a for-fun type of thing, but I continued that, and in high school, I was good friends with this guy who was a part of Wheelchair Sports Camp.
He was really talented, as well, and we did a couple things in the studio, and it was really awful. Listening back, it wasn't bad for the state of mind we were in and our maturity level, but it was pretty awful. We were in the studio and would pay $25 an hour, and I'd sit in the studio and try and make a beat or pay for a beat, and I realized I couldn't afford $250.
I started saving up and got a job working at Elitch's. That was my first job, and I just saved every check. I bought my first beat machine when I was sixteen or seventeen and started making my own beats. Again, it was pretty awful.
What is it like to be a woman who also has these triple obstacles you have to get over?
Definitely. Not just being a woman, but being a handicapped woman, being a lesbian woman, there's always obstacles, but I think I get treated equally very well. I think I have to go out of my way to do it. I'm assertive and up front. I think I do a pretty good job at throwing myself out there. People wouldn't come up and talk to me because I'm in a wheelchair. I have to go outside of my comfort zone a little bit to get noticed.
And by doing so, you challenge the comfort zones of others.
Exactly. I think hip-hop is a great way to do that. I get on stage and people see Wheelchair Sports Camp and wonder what's going to happen, and I start to rhyme, and then it goes from there.
What's the purpose of the band? Is it to be an advocate for the handicap, or is it to spread the message of hip-hop?
I'm not really focused on being signed or getting a deal. That was something I was really concerned about as a kid, but now, as long as I know I've reached enough people to maybe think twice about something... They hear my song, and they might take things differently because of it. I do it because I love it, and not because of what people are going to think of it. I do it because of what I believe in.
When I first saw you perform, you did a song you called your one-and-only dis track. How was that born?
That was my point to make it general, but the people who know the situation know who it is. It really is about the guy who I started the band with. He had abuse problems, and every time he would get upset, he would quit the band. I told him, this is the last time you're quitting, and then he put out a freestyle on his MySpace called "Fuck Handicapped People." The album title was Wheelchairs Are for Retards. Instead of writing a dis track, I wrote a dis blog and tried to be funny. I thought about it forever and then felt like I HAD to come correct.
Posted by BA Haller at 7:03 PM
From the London Evening Standard in the UK:
Campaigners have condemned a decision to scale back a vital transport scheme which allows disabled people to get around the capital independently.
The Taxicard scheme, launched in 2008, offers wheelchair users the chance to travel by taxi at reduced rates.
But London Councils' transport and environment executive committee voted through plans to limit the scheme without public consultation.
Recommendations for a leaner service include refusing any further applications for a card, at least until April, and only allowing users to make journeys costing up to £12.80.
Minimum charges per journey — currently set at £1.50 — may also increase, and a cap has been put on the number of journeys each card-holder can make.
Campaigners from charity Trailblazers say the scheme is essential. Only 10 out of 260 Tube stations are wheelchair friendly.
Tanvi Vyas, 27, of Trailblazers, is a wheelchair user who suffers from muscular dystrophy. She said: “The Taxicard scheme is essential to leading an active life in London.
"Many disabled people, young and old, rely on the scheme to meet friends, go shopping and even get to work.”
The charity plans to challenge the transport committee of the Greater London Authority, as well as the Mayor, and will be raising the issue with transport minister Norman Baker.
A Taxicard spokeswoman said: “The scheme has increased by 17 per cent in the last three months and there are nearly 100,000 users. We cannot keep expanding.”
Under new plans card-holders will be able to claim no more than 104 journeys per year, cutting by 30 per cent the number previously available in boroughs such as Southwark.
The transport committee also suggested the scheme be axed in boroughs that overspend.
Posted by BA Haller at 6:57 PM
A boy and his dog is an enduring American theme, but for 7-year-old Aaron Cramtton, the canine is his lifeline.
Aaron (pictured) was diagnosed with severe autism at the age of 2, after his mother Amy Cramtton noticed that he wasn't developing normally. Aaron couldn't speak, nor could he tolerate being touched.
His symptoms progressed into half-hour long tantrums that seemed to have no cause. Digestive problems followed, regularly forcing Cramtton, her husband and her other two young children to the hospital on a regular basis.
In Kennesaw, Ga., Cramtton struggled to find ways to deal with her son's disorder in a small town lacking the resources to assist her. After browsing the Internet for resources that could help with autism, she found Canine Support Teams in Temecula.
Founded in 1989, the team's mission is to provide specially trained dogs to people with disabilities to support their personal, social, and occupational independence.
Though the group doesn't specialize in dogs trained to assist children with autism, Cramtton was told that the organization would do its best to train a dog to suit Aaron's needs.
Cramtton didn't have the money to pay for the flight to California for her and Aaron. But thanks to the financial support of Autism in Georgia, Inc., a nonprofit that assists families grappling with the disorder, mother and son were on a Nov. 7 flight to California to meet Aaron's new dog in Temecula.
"The flight was grueling because Aaron does not do well in new surroundings, but we were so excited to meet his new dog," Cramtton said.
The training process for support dogs is exhaustive and takes about a year to a year and a half, depending on the severity of the disorder of the person the dog will assist, according to Jennifer Cuff, a Wildomar resident and puppy raiser for Canine Support Teams.
Before Aaron could meet his dog, the dog had to be socialized and tested in public.
When Aaron and his mother met his dog, a golden retriever named Cricket, Aaron instantly bonded. It was an unusual occurrence for a child with autism, who typically are adverse to touch.
Aaron spent two weeks in Temecula getting used to Cricket. When they first appeared in public together at The Promenade mall in Temecula as a final test, Cricket passed with flying colors.
Now back home in Georgia, Cricket assists Aaron in getting dressed, and is trained to help him turn off light switches and close doors, which Aaron doesn't remember to do. His mother said Cricket has cut down tantrum times from a half hour to six minutes.
"Now, when Aaron is having a fit, Cricket will just nudge him with her nose and the touch gets his attention so fast he gets up and just looks at her in amazement," Cramtton said.
Cricket has also helped Aaron become more social. People are now drawn to him, and often ask if they can pet Cricket.
"What Cricket has done for Aaron, in getting people to come to him when before they were afraid because he acted differently, is something I can't describe," Cramtton said. "It just makes me so happy for him not to see him so afraid."
Posted by BA Haller at 9:38 AM
Rutgers is moving forward on a new research collaborative called the Brain Health Institute (BHI), designed to bring fresh insight into neurological diseases — from brain injuries suffered by the young to neurodegenerative disorders that affect the elderly — and their potential cure.
As a first step in moving this major initiative ahead, the David R. Clare and Margaret C. Clare Foundation has given support for a top-level administrative director.
Negotiations are under way with pharmaceutical firms to endow internationally recognized scientific directors of three principal research areas: autism, Alzheimer's disease, and auditory aging. Next on the list — the scheduling of a series of high-profile seminars and scientific conferences.
The institute is the brainchild of Robin Davis (left in picture), executive vice dean of Rutgers' School of Arts and Sciences, and Karl Herrup, chair of the Department of Cell Biology and Neuroscience, both distinguished neuroscientists.
The idea is to unite the Rutgers faculty who have deep strengths in neuroscience, genetics, and related disciplines and to create a powerful, productive partnership with New Jersey's life sciences industry with the goal of accelerating research on neurological disease and disorders, Davis said.
"We feel this is an important initiative for the state," Davis added. "It consolidates the benefits of academic research with the economic power of the New Jersey pharmaceutical industry."
President Richard L. McCormick has identified the institute as one of Rutgers' key fundraising goals — it is a high-priority initiative of the recently launched Our Rutgers, Our Future campaign — and the university has already assembled an impressive corporate advisory board for the research center, with members from Johnson & Johnson, Novartis, Pfizer, Merck, and Forest Laboratories, among others.
Pooling resources has advantages for both the university and the pharmaceutical industry. The latter has seen research productivity slip dramatically in the past decade, and cost-cutting has taken a toll on basic research in corporate labs. Rutgers neuroscience researchers, meanwhile, have built national reputations on an individual level, but could benefit from the potentially greater rewards that come from a more collaborative effort.
The collaborative approach dovetails with the federal National Institutes of Health's emphasis on "bench to bedside" solutions, which fuse basic research with clinical applications. The idea is to tap the best of both worlds. For example, Rutgers is strong in foundational research, the methodical uncovering of disease mechanisms, while the pharmaceutical industry excels in drug discovery and development.
As part of the Brain Health Institute, Rutgers researchers will continue to do noteworthy, grounded research. But they'll have access to resources to engage in more high-risk, high-impact work. Davis compared it to research at Google, where innovation and teamwork are fostered to catalyze advances that benefit their users. "Our vision for the BHI is to engage in research that, if successful, could change the world," she said.
Down the road, Rutgers plans to raise money for a building to house the BHI, a place for faculty from the university and scientists from the private sector to conduct their research under the same roof.
The idea is create an environment that protects intellectual property but provides a means for discussion and collaboration that would be unique.
"The kind of intellectual ferment that can spark rapid development and deployment of new ideas doesn't happen enough in New Jersey, and it is the aim of the BHI to create a fundamentally new approach to clinical research," Davis said.
Posted by BA Haller at 9:34 AM
BEREA, Ohio -- Some U.S. students are getting hands-on experience helping non-verbal children with autism, Rett syndrome, cerebral palsy and/or Down syndrome communicate.
Students majoring in communication disorders at Baldwin-Wallace College in Berea, Ohio, participate in a program offering a summer camp that runs two days a week; and a 10-month program that meets once a week during the academic year. The children are functionally non-verbal with an average age of 7 or 8.
"There is nothing like this program anywhere else in the country," Colleen F. Visconti, chairwoman of the communication program and director of the speech clinic, says in a statement. "Word is spreading and we have already been contacted by parents from across the country expressing interest."
Throughout the sessions the children are encouraged to communicate -- if they can -- with their voices or with technological devices on loan from manufacturers.
"When the families start coming to the program, they've usually tried everything, and nothing is working and their child is still not talking," Christie Needham, clinical supervisor, says. "We have been able to give them the opportunity to see how they're children can succeed in communicating."
Posted by BA Haller at 9:31 AM
Former National Football League running back's lawsuit says he is being shortchanged on his disability payments
The Baltimore Sun:
A former National Football League running back whose three-year career ended after a helmet-to-helmet hit in a training camp scrimmage with the Washington Redskins three seasons ago has filed suit in federal court in Baltimore, claiming that he is being shortchanged on his disability payments.
Eric Shelton (pictured), who said he was forced to retire with what was diagnosed as stenosis of the spine, or a narrowing of the spinal column, is seeking more than $18,000 a month — the highest disability payment allowed under the current collective bargaining agreement with the NFL Players Association.
Shelton, 27, has received about half that amount after the retirement board that controls the NFL pension plan determined that Shelton's disabilities manifested themselves "six months to a year" after the injury occurred and that he was eligible only for what is called a degenerative disability payment. Shelton is claiming that he should be eligible for an active disability payment because he was injured while playing for the Redskins.
"The NFL wants a good public image but isn't willing to pay people who have terrible, career-ending, really serious injuries like occurred to Eric Shelton," said Cy Smith, a Baltimore attorney whose Washington firm is representing Shelton.
According to the lawsuit filed Nov. 29, Shelton suffers from transient paralysis, transient paresthesias (abnormal feelings in the extremities), migraines and other neurological disorders as a result of the injury. Shelton said he was unable to continue working in the pharmacy at a Walgreens drugstore because of his disabilities.
"The test does not require that you be absolutely helpless," Smith said. "It includes people like Darryl Stingley" — who was completely paralyzed — "who we recall from the 1970s, but is not limited to them. The test is whether you're substantially unable to work. Eric Shelton is unable to work. He tried, and he failed. He's a proud person who much rather would be working for a living than receiving a disability pension."
Doug Ell, an attorney for the NFL Player Retirement Plan that is run jointly by the league and the NFL Players Association, said in a statement Monday that in August, the retirement board "unanimously found Mr. Shelton to be totally and permanently disabled as a result of NFL football activities, including a helmet blow sustained during a July 2008 scrimmage with the Washington Redskins. As a result, Mr. Shelton is currently receiving total and permanent disability benefits of $110,000 per year."
Ell said the disability payment that Shelton is seeking is typically awarded to those players who are paralyzed or partially paralyzed as a result of an injury sustained while playing. In his statement, Ell said that Shelton worked in the pharmacy until April 2009.
Shelton's suit comes during a time when the NFL has started to crack down on helmet-to-helmet hits, including one on Ravens tight end Todd Heap last month. Several players have been fined tens of thousands of dollars. Steelers linebacker James Harrison was fined $75,000.
Shelton, who lives in Charlotte, N.C., was not available for comment Monday. A second-round draft choice of the Carolina Panthers in 2005, Shelton sat out his rookie season with a broken foot and played sparingly in 2006 before being cut before the 2007 season. He was cut by the Redskins in 2008, two days after the injury occurred.
Smith said he was unaware that Shelton settled an injury insurance claim with the Redskins after being cut, but added that it was irrelevant to the current case. That Shelton had sustained a season-ending neck injury while playing at the University of Louisville also did not affect his disability status, Smith said.
"Whether he got worker's comp or some sort of insurance from the Redskins does not affect his right to this benefit," Smith said. "It's not a handout or anything, it's disability pension."
Smith's firm also represented the estate of the late Mike Webster in the first case against the NFL pension plan in 2005. Webster's family claimed that concussions and other injuries sustained by the former Pittsburgh Steelers' center contributed to his being disabled after he retired from football. A federal judge in Baltimore awarded his family nearly $1.2 million in disability payments. That decision was upheld after the NFL appealed.
"Based on my perspective, having handled the Mike Webster case and other claims against the NFL, their position is always, 'We're going to fight you on the benefits,'" Smith said. "It took a long time for the NFL even to recognize publicly that repetitive concussions and then this year, helmet-to-helmet injuries, were the most dangerous types of hits and injuries that you can have."
Smith wouldn't say whether similar lawsuits are forthcoming from his firm, but Ell acknowledged that several others like Shelton's have been filed.
"Beyond the question of whether there are other suits … the real question is, 'Are there other people like Eric Shelton out there?' and I think the answer is 'absolutely yes,'" Smith said.
Posted by BA Haller at 9:22 AM
Monday, November 29, 2010
The Boston Globe:
Zhenya Pankova sends and receives 200 text messages a day. That’s typical for a ninth-grader. But to read her texts, she presses her Samsung cellphone to her ear. Pankova is blind.
Tweet 0diggsdiggYahoo! Buzz ShareThis The 14-year-old can also search the Web, read textbooks, and translate Spanish assignments. For that, she uses the BrailleNote Apex, a wireless device about the size of a netbook computer that she carries over her shoulder.
“The advancements are incredible for kids,’’ said Janet Ulwick-Sacca, who teaches children with visual impairments at Georgetown High School.
Earlier this week, Pankova attended a technology fair at the Carroll Center for the Blind in Newton to check out the latest products from the evolving market called assistive or adaptive technology — products for low-vision and blind people.
Smartphones such as the LG series, iPhone, Droid, and Samsung Haven now include features that allow the devices to speak aloud information that would normally be displayed on-screen.
Previously, a blind person would have to buy text-to-speech software such as Mobile Speak, which can cost upward of $400, for similar capabilities.
Many of these lifestyle features are not made specifically for the blind, but for users who multitask. Similarly, smartphone apps like oMoby, marketed as a tool to help consumers identify products by taking a picture, are helping blind people like Brian Charlson shop.
In the past, he would have to shop with a sighted person and slap a magnetic Braille label on the food he bought so he could identify it at home. Now he snaps a picture with a free app, and his phone gives him information about the item, including pricing and where else it can be found.
“When something becomes interesting to the sighted public, it might make it accidentally have more use to me,’’ said Charlson, director of computer training services at the Carroll Center. “It’s improved my quality of life dramatically. I’m not dependent on a sighted person to do things for me that I can do myself.’’
The design and ease of use of adaptive technology improves each year. One example is the Victor Reader Stream by HumanWare, based in Quebec. “It’s an iPod for someone who’s visually impaired,’’ said Greg Stilson, a HumanWare product and support specialist who is legally blind. About the size of a smartphone, the digital device “reads’’ books, text, and MP3 sound files that have been downloaded onto a flash memory card.
The hand-held tool is light years away from the Braille writer Stilson carried when he was in school. “It weighed 20 pounds, and I’d have to lug it from class to class,’’ he said.
When the Americans with Disabilities Act passed in 1990, the World Wide Web was just coming online. An updated law, the 21st Century Communications and Video Accessibility Act, was designed to allow people with disabilities to have full access to print, television, the Internet, and other electronic communications. Signed into law by President Obama in October, it was introduced last year by Massachusetts Congressman Edward Markey, a Democrat from Malden.
Among the law’s provisions: Every new smartphone model must be accessible to blind people. “It means instead of having two choices, I will have as much choice as you do,’’ Charlson said.
Social networks like Facebook are a challenge for blind people, but companies like Freedom Scientific are offering products that help. Its JAWS screen reader, for Job Access With Speech, converts Facebook and other status updates into audible speech. But with so many hypertext links and moving parts on Facebook, not all members of the blind community have embraced it.
“I’m good with Twitter,’’ said Gayle Yarnall, 63. The director of adaptive technology at Perkins Products, a technology and training company for the blind in Watertown, Yarnall uses the program Qwitter to tweet via speech and keyboard commands.
Jennifer Harnish of Natick, 40, began losing her sight when she was 15. She uses an iPod Touch docked in a keyboard device to take notes. By tapping the notes application, she can e-mail herself what she’s written. While adaptive technology is no replacement for writing by hand, something she wishes she could do, the enhanced capabilities for the sight-impaired provide a lifeline. “It’s amazing to go into the store and be able to use something right off the shelf,’’ Harnish said. “When you are blind, you don’t want to look blind. You want to have the same capability as everyone.’’
The market for adaptive technology is still small. There are 1.3 million blind people in the United States, according to the National Center for Health Statistics, and not every potential user knows what’s available. “It’s going to take Steve Jobs’s or Bill Gates’s mother to come down with macular degeneration to really change the marketplace,’’ said Scott Krug, president of Let’s Go Technology in Worcester, which sells magnifiers for the low-sighted.
Many of Krug’s products are not available in stores like Wal-Mart or Best Buy. “The market right now is too small for these big boys,’’ he said. “But the more people hear about these advancements, the more they want it.’’
Posted by BA Haller at 6:29 PM
U.S. Adaptive Paralympic Bobsled Team says it's been hassled, treated unequally at Utah Olympic Park
The Deseret News in Utah:
Tensions are swirling at the Utah Olympic Park around a bobsled team that's a little bit different. The athletes have disabilities and they're trying to get some respect, both in the international sports world and on the track near Park City.
Dave Nicholls, director of the U.S. Adaptive Paralympic Bobsled Team, complains his team has been hassled, ridiculed and treated unequally with able-bodied athletes.
"Myself and some of the other (disabled) athletes have been dealt with a little bit unprofessionally and misappropriately," Nicholls said. But after sharing his grievances with a reporter on Saturday, he called back later to say that Olympic Park management now seems to be listening to his concerns.
For years disabled bobsledders have had only one track in the world to use, Utah Olympic Park. Only recently, the Canadian facility in Calgary began allowing limited access to such teams.
When he's training, Nicholls trades in his wheelchair for a seat in a specially modified bobsled, which he pilots down the Utah track. Nicholls used to be a competitive skier but was partially paralyzed when an out-of-control snowboarder rammed into him and broke his neck.
The bobsled he pilots was donated by the National Abilitiy Center. "It allows us to do what we need to do to get down the track," Nicholls said. "It's a rush, it's a challenge, and it's my dream."
After a running push from his brakeman, who is not paralyzed, Nicholls' sled made it down the track in 57 seconds. He was euphoric. "Whoooo!!!" Nicholls exclaimed. "That was a run, man! That was a run!"
Nicholls says he has complained to management at Utah Olympic Park that the facilities do not comply with the federal Americans with Disabilities Act. That law sets standards for things like wheelchair access, special restrooms and handicapped parking. "And we're yelled at," Nicholls said on behalf of his team. "We can't park here, and we can't park here."
He claims the team gets harassed regularly by at least by one track employee who is impatient and acts angry with team members. "We've been yelled at, and we've been hollered at," Nicholls said. "We've been told that, you know, 'Come on guys! Get with it a little faster here! We got a real program that we got to run!' "
The pace of activity at the track can be hectic because luge, bobsled and skeleton athletes compete for track time. Nevertheless, the official who recently took control of daily operations says the paralympics team is welcome. "They've shown that they can get down the track," said Marc Norman, vice president for Venues & Sport for the Utah Athletic Foundation. "I think it's a great fit and one that we're anxious to keep moving forward."
But the two sides have tangled over issues like fees, coaching, advance notice when the paralympic team is coming, and whether they need extra helpers at the track.
Norman describes the controversy as a communication issue he is eager to resolve. He said he wants the U.S. Bobsled and Skeleton Federation to adopt rules and guidelines so everyone will know what practices are appropriate for disabled bobsledders. "We agree they can do it," Norman said. "We just want to start trying to define what it is that needs to be in place to make sure it's safe."
As for alleged deficiencies under the federal Americans With Disabilities Act, Norman said he's willing to look into it and make changes if necessary. "We should be as compliant as we can be and are required to be, definitely," Norman said.
Posted by BA Haller at 6:13 PM
Tim Rushby Smith for The Guardian in the UK:
I don't like the expression "confined to a wheelchair". As a paraplegic, my wheelchair enables me to live a full and active life. But any wheelchair-user will tell you that trying to get a pair of 25in diameter wheels into a car can be a real pain. They have to be lifted over one's lap, a difficult manoeuvre, especially if it's wet and you are trying to look smart. Not to mention stowing them in aeroplane lockers, which is just impossible.
But designer Duncan Fitzsimons hopes to change all this with his invention of a wheelchair wheel that can be folded – tyres and all – until it fits into a sports bag. The former Royal College of Art design student explains: "One of our visiting tutors was discussing folding-bike design and how the wheel has to be big enough to give a good ride but small enough to fold into a manageable size. I decided to try to find a way to get the best of both worlds, which soon came down to having to fold the wheels.
"There aren't many ways you can fold a tyre up, but I soon realised that by pulling I could easily change it into a torpedo shape." The resulting foldable wheel weighs the same as a standard one.
At his graduation exhibition, Fitzsimons was told how useful the design could be for wheelchair users, and after a trip to the Mobility Roadshow, he sparked the interest of wheelchair companies.
His next step is deciding which manufacturer to licence his innovative design to. Now it's only a matter of time before wheelchair users will be able to fit big wheels into small spaces.
Posted by BA Haller at 5:56 PM
Despite decades spent playing sober commanders and serious captains, Leslie Nielsen (pictured) insisted that he was always made for comedy. He proved it in his career's second act.
"Surely you can't be serious," an airline passenger says to Nielsen in "Airplane!" the 1980 hit that turned the actor from dramatic leading man to comic star.
"I am serious," Nielsen replies. "And don't call me Shirley."
The line was probably his most famous -- and a perfect distillation of his career.
Nielsen, the dramatic lead in "Forbidden Planet" and "The Poseidon Adventure" and the bumbling detective Frank Drebin in "The Naked Gun" comedies, died on Sunday in Fort Lauderdale, Fla. He was 84.
The Canada native died from complications from pneumonia at a hospital near his home, surrounded by his wife, Barbaree, and friends, his agent John S. Kelly said in a statement.
Critics argued that when Nielsen went into comedy he was being cast against type, but Nielsen disagreed, saying comedy was his .
"I've finally found my home -- as Lt. Frank Drebin," he told The Associated Press in a 1988 interview.
Comic actor Russell Brand took to Twitter to pay tribute to Nielsen, playing off his famous line: "RIP Leslie Nielsen. Shirley, he will be missed."
Nielsen came to Hollywood in the mid-1950s after performing in 150 live television dramas in New York. With a craggily handsome face, blond hair and 6-foot-2 height, he seemed ideal for a movie leading man.
Nielsen first performed as the king of France in the Paramount operetta "The Vagabond King" with Kathryn Grayson.
The film -- he called it "The Vagabond Turkey" -- flopped, but MGM signed him to a seven-year contract.
His first film for that studio was auspicious -- as the space ship commander in the science fiction classic "Forbidden Planet." He found his best dramatic role as the captain of an overturned ocean liner in the 1972 disaster movie, "The Poseidon Adventure."
Behind the camera, the serious actor was a well-known prankster. That was an aspect of his personality never exploited, however, until "Airplane!" was released in 1980 and became a huge hit.
As the doctor aboard a plane in which the pilots, and some of the passengers, become violently ill, Nielsen says they must get to a hospital right away.
"A hospital? What is it?" a flight attendant asks, inquiring about the illness.
"It's a big building with patients, but that's not important right now," Nielsen deadpans.
It was the beginning of a whole new career in comedy. Nielsen would go on to appear in such comedies as "Repossessed" -- a takeoff on "The Exorcist" -- and "Mr. Magoo," in which he played the title role of the good-natured bumbler.
But it took years before he got there.
He played Debbie Reynolds' sweetheart in 1957's popular "Tammy and the Bachelor," and he became well known to baby boomers for his role as the Revolutionary War fighter Francis Marion in the Disney TV adventure series "The Swamp Fox."
He asked to be released from his contract at MGM, and as a freelancer, he appeared in a series of undistinguished movies.
"I played a lot of leaders, autocratic sorts; perhaps it was my Canadian accent," he said.
Meanwhile, he remained active in television in guest roles. He also starred in his own series, "The New Breed," "The Protectors" and "Bracken's World," but all were short-lived.
Then "Airplane!" captivated audiences and changed everything.
Producers-directors-writers Jim Abrahams, David and Jerry Zucker had hired Robert Stack, Peter Graves, Lloyd Bridges and Nielsen to spoof their heroic TV images in a satire of flight-in-jeopardy movies.
After the movie's success, the filmmaking trio cast their newfound comic star as Detective Drebin in a TV series, "Police Squad," which trashed the cliches of "Dragnet" and other cop shows. Despite good reviews, ABC quickly canceled it. Only six episodes were made.
"It didn't belong on TV," Nielsen later said. "It had the kind of humor you had to pay attention to."
The Zuckers and Abraham converted the series into a feature film, "The Naked Gun," with George Kennedy, O.J. Simpson and Priscilla Presley as Nielsen's co-stars. Its huge success led to sequels "The Naked Gun 2 1/2" and "The Naked Gun 33 1/3."
His later movies included "All I Want for Christmas," "Dracula: Dead and Loving It" and "Spy Hard."
Between films he often turned serious, touring with his one-man show on the life of the great defense lawyer, Clarence Darrow.
Nielsen was born Feb. 11, 1926 in Regina, Saskatchewan.
He grew up 200 miles south of the Arctic Circle at Fort Norman, where his father was an officer of the Royal Canadian Mounted Police.
The parents had three sons, and Nielsen once recalled, "There were 15 people in the village, including five of us. If my father arrested somebody in the winter, he'd have to wait until the thaw to turn him in."
The elder Nielsen was a troubled man who beat his wife and sons, and Leslie longed to escape. As soon as he graduated from high school at 17, he joined the Royal Canadian Air Force, even though he was legally deaf (he wore hearing aids most of his life.)
After the war, Nielsen worked as a disc jockey at a Calgary radio station, then studied at a Toronto radio school operated by Lorne Greene, who would go on to star on the hit TV series "Bonanza." A scholarship to the Neighborhood Playhouse brought him to New York, where he immersed himself in live television.
Nielsen also was married to: Monica Boyer, 1950-1955; Sandy Ullman, 1958-74; and Brooks Oliver, 1981-85.
Nielsen and his second wife had two daughters, Thea and Maura.
Posted by BA Haller at 4:58 PM
The Republican-American in Conn.:
TORRINGTON, Conn. — What started out as a gesture of kindness by AMVETS Post 24 has evolved into a mission that has crossed state lines to make life easier for disabled veterans and others.
About four years ago, Post 24 was asked if it could secure a power chair for a paraplegic veteran of the Iraq War. Led by post Chaplain Roger Geiger, the post found a used chair, reconditioned it and presented it to the veteran from Millerton, N.Y.
"Once the word of what we did got out, we started getting more requests," Geiger said.
"It was slow at first, but has taken off the last couple of years. This year alone we've provided 23 power chairs and electric scooters."
Posted by BA Haller at 3:25 PM
In Florida high school, teen with Down syndrome just another student, except she is Homecoming Queen, too
The Florida Times-Union:
In the grand scheme of prayer requests, theirs seemed fairly simple.
Dave and Melanie Stieglitz were asking for friends at their church to pray for the youngest of their three daughters, the one who was born with Down syndrome. Not that they wanted God to change anything about her. To the contrary, they were hoping, praying, to change those around her. Specifically to change her classmates at Fletcher High School. Not all 2,000 of them. Just one.
God, they asked, send a friend to Cara (pictured).
Someone to sit with her at lunch.
At the time, Cara Stieglitz was 14 years old, a Fletcher freshman. And if you had wandered into the school and, just at a glance, tried to pick who was least likely to be named homecoming queen, you might have pointed at the girl who was eating by herself.
"As a parent, that pulls at your heart," Melanie Stieglitz said of picturing her daughter sitting alone.
So every Tuesday, she went to school and ate lunch with Cara. And on Sundays, they prayed that someone else would join her.
They never imagined that four years later Cara would be standing on a football field, wearing a purple dress that she and her mother picked out for homecoming. The court already had been narrowed from more than 80 nominees to 10 boys and 10 girls. One by one, the runners-up were announced. Then the king.
Jesse Hughes fits the traditional mold of a homecoming king. Star basketball player, 4.2 grade point average, good-looking, popular. He was the nominee of the senior class.
But the queen ...
Several television stations were there that night, so you may have seen video of the moment. The queen leaping up and down, her grin making the king's grin grow even bigger. Everyone in the stands on their feet. Parents dabbing their eyes. And not just Cara's parents.
The king said his mom was crying.
"And not for me," he said with a laugh.
So beyond prayer, how did this happen? How did Fletcher High become the scene of a story that feels almost too good to be true, like something straight out of a movie script? How did Cara go from sitting by herself in the lunchroom to standing by herself on the football field, the crowd cheering as the time-honored symbol of high school popularity was placed onto her head?
This is Cara's story. But it is also her classmates' story.
Dayle Timmons' friends have been calling her "the Queen" ever since she was the 2004 Florida Teacher of the Year. She is a lifelong special education teacher, now at Chets Creek Elementary. She writes a blog about her experiences. And after Cara Stieglitz was named homecoming queen at Fletcher, Timmons recalled when the teen was entering kindergarten at Alimacani Elementary.
Melanie Stieglitz sat down with school officials, saying she wanted her daughter to be included in a traditional kindergarten class.
"Although inclusion was the new buzz word, it was not really being done in Duval County at the time - at least not with the significant challenges that Cara had," Timmons said.
Although there certainly were some "bumps in the road," by the end of the year everyone was quite pleased with the results. Not just because Cara had made progress learning, maturing and making friends, but because of how she had affected her classmates.
"The other children in that class had learned from Cara," Timmons wrote on her blog. "In fact, they had learned the most. They had learned how to be helpful without doing it for her. They had learned empathy."
Timmons has tried to keep up with Cara. She remembers getting a call from Melanie Stieglitz to tell her that Cara had been invited to her first sleepover. The two women cried about that. When Timmons got an e-mail saying that Cara had been nominated for homecoming queen, there were more tears. And when she saw the picture from that night on the football field ...
Quite a few people, even some at Fletcher, tried to steer her away from going to the Neptune Beach high school. They worried whether she would fit in, whether she would get picked on, whether she'd be safe. Maybe, they said, she'd be better off at Sandalwood, in a program tailored for special needs students.
But her parents were determined this was what was right for her. And even more, Cara was determined.
She always has been. Her father recalls that Cara always wanted to do whatever her sisters were doing. She often failed. But she also often succeeded. She learned to ride a bike (no easy task). She plays soccer, shoots basketball and bowls. And she wanted to go to Fletcher.
"I was scared," her mother said. "You're dropping your child off with 2,000 students. You hear so much bad stuff, you don't really trust other students. I had my doubts."
The doubts didn't go away instantly; It was a gradual process. By her junior year, Cara's mother would still show up on Tuesdays, bringing her daughter lunch. But Cara no longer wanted Mom to stay with her and eat. She had friends sitting with her.
"It became, 'Thanks, bye,'" Melanie Stieglitz recalls with a smile.
Still, it's a long way from having friends to sit with in the lunchroom to riding around the football stadium in a convertible.
Fletcher Principal Dane Gilbert and others say the tipping point - the event that might have ensured Cara being crowned - was something called Challenge Day. It's a national program that integrates into schools and, over the course of several intense days, attempts to break down cliques, open communication and unite students.
The students split into groups and start one exercise by saying, "If you really knew me ..."
If you knew Cara, her sisters have been saying for 18 years, you'd realize how much she is just like everyone else. Only better.
Posted by BA Haller at 3:04 PM
From TV NZ:
A new report claims the social services that support New Zealand's 10,000 strong deaf community are failing to meet their needs.
The report - The Deaf Way - estimates 40% of deaf people have low literacy and social problems, which Deaf Aotearoa New Zealand says is entirely unnecessary.
The chief executive of lobby group Deaf Aotearoa, Rachel Noble, said the report highlights the failure by crucial mainstream agencies like police, Work and Income, and health and social services to effectively support and communicate with the deaf community.
"We're missing out on a lot of information, access to services, access to employment, education& deaf people are really visual people, so that information needs to be available in visual means including sign language, captions, things like that," said Noble.
The report also explains the disempowerment and isolation New Zealand's deaf community feels.
It notes that there aren't enough learning interpreters, and that access to them is restricted with long waiting times, and support systems are underfunded.
It also showed that families, schools, and even deaf children struggle to get free sign language training.
Technology has provided a "small revolution" for the deaf and the community is eagerly awaiting the local development of video interpreting.
While some people are advocating that Deaf Aotearoa should be a "one-stop shop" for deaf people to get all they need from one provider, the report argues that it is impossible for Deaf Aotearoa to meet all the needs of deaf people who want to live ordinary lives in New Zealand communities.
Deaf Aotearoa is being urged to improve communication within its own sector, focusing on a unified approach rather than having "organisational focus distracted by conflict".
Dr Judy McGregor of the Human Rights Commission said the report should prompt a major review of sign language.
"We have a large number of complaints about the quality, the availability and access to sign language in the community," said McGregor.
Deaf Aotearoa wants a dedicated multi-agency approach to tackle the problems.
Petition for ACC to cover noise injury
Meanwhile, the National Foundation for the Deaf is circulating a petition seeking support to overturn a law that sets a threshold for hearing damage before claimants can be covered by ACC.
The law, part of the Accident Compensation Act which came into force on July 1, means people with noise-damaged hearing must have a total loss of at least 6% before ACC will accept a claim and give rehabilitation. This means cases are not judged on the person's needs, the Foundation says.
"Noise usually attacks the high tones of our hearing which we use to understand conversations at work and at home," NFD chief executive Louise Carroll said.
"We have to lose a lot of hearing in those tones to reach a 6% total loss, and the impact on our lives can be serious," Carroll said.
"The NFD, along with the rest of the hearing disability sector, told the government the threshold was wrong and would create serious injustice, but the government ignored us all."
Carroll said the NFD wanted ACC to go back to judging each case on its merits, rather than according to a formula.
She said that while the average age of people lodging claims with ACC for noise-damaged hearing was 70 for men and 69 for women, the issue was not just one for older people.
"This affects everyone who works in a noisy environment," she said.
"The 6% threshold is just one of the hurdles people with noise injury now have to face, and it has to be changed."
The petition will be promoted by organisations in the hearing disability sector including audiologists and the Hearing Association.
Posted by BA Haller at 2:47 PM
From the Ghana News Agency:
ACCRA, Ghana -- Ms Anna Bossman, Deputy Commissioner at the Commission on Human Rights and Administrative Justice (CHRAJ), has asked the government to formulate a comprehensive policy on the vulnerable and disabled in the country.
She also said there was the need to train professional care-givers to assist the aged and the disabled.
Ms Bossman made the request at the launch of a handbook that specifies what care recipients expect from care-givers, in Accra at the weekend. The handbook: "What the Care Recipient Wants You to Know," is a compilation by Sharecare Ghana, an association of people with autoimmune and neurological conditions, including their families and care-givers. The booklet is written from the perspective of someone receiving care from another person, and is expected to guide students of social work and care-givers taking care of people with disabilities.
Ms Bossman called on the government to consider introducing community-based home care for people with disabilities and the vulnerable, saying that could be a cost-effective way of caring for the vulnerable.
Mrs Mavis Okang-Afoakwah, Director of Ripples Health Care, an organization that offers specialist palliative acre to people suffering from cancer and other life limiting illnesses, said there was the need for a policy on home-based care service in the country.
She cited Namibia, Uganda and other African countries that have such policies and said it was necessary because anybody could become disabled at any time.
Nana Yaa Agyeman, founder of Sharecare, Ghana, said the organization advocates professional home-care, saying it would help save the state money in hospital cost and give persons with severe disabilities assistance to start working.
She appealed to Ghanaians to change their negative mindset about persons with disabilities. Ms Farida Bedwei, a Member of Sharecare, Ghana, sharing her experiences as a disabled person said most care-givers perform their duties in a mechanical manner without any compassion for the clients.
She said: "It can be humiliating and depressing, especially for those who got their conditions when they were fully-independent adults."
Ms Bedwei advised care-givers of disabled people to perform their duties with love and compassion. Home care makes it possible for care recipient to remain at home in a safe environment and in some cases have more independence.
Posted by BA Haller at 2:43 PM
The Washington Post:
As the mother of a teenager who got a diagnosis of attention-deficit/hyperactivity disorder in 2004, I wasn't surprised to read the new report from the Centers for Disease Control and Prevention that said the number of ADHD cases in children jumped by 22 percent between 2003 and 2007 - an increase of 1 million kids.
From the day my son started school, I've watched popular awareness of disabling distraction rise, to the point where it's easy to believe the CDC estimate that one in 10 U.S. children - a total of 5.4 million kids - now has ADHD, as reported by their families. This might even be positive news, in that at least some kids who need medical attention are getting it. Except for one problem. Growing along with those numbers is one of the most aggressive, lucrative, bewildering and often just plain useless sales forces humanity has ever seen - call it the ADHD-industrial complex.
This includes not only the U.S. pharmaceutical industry, which by one measure sells more than $5 billion worth of ADHD medications each year - and which only in the United States and New Zealand may market directly to the public - but a growing league of all-but-unregulated, usually costly and sometimes wildly imaginative alternatives, including herbal supplements, complicated exercise regimes to stimulate specific brain regions, magnetic mattresses, personal coaches and therapy "assisted" by dolphins.
If modern mothering is madness, what metaphor might suit the straw-grasping of parents of children with this disorder, whose main symptoms are distraction, inattentiveness, forgetfulness and impulsivity? The ADHD industry's exuberance matches the vulnerability of its target market: millions of desperate parents who, given the strongly hereditary nature of ADHD, are often just as distracted and impulsive as their progeny.
Oh, did I mention that I got my own ADHD diagnosis at age 50, just a few months after my son's? This double whammy inspired me to spend a year investigating the grab bag of symptoms constituting the current definition of ADHD and trying to figure out the best ways to cope. I was extra-motivated to seek non-pharmaceutical treatments when my son balked at continuing to take stimulant medications after a year-long trial - about the average amount of time kids will keep taking them, as I later learned, and a big reason pills usually aren't reliable as a single or long-term strategy.
In the course of my year of focusing on distraction, I got my head examined by Daniel Amen, the legendary Southern California clinician who says he can detect ADHD with a brain scan for $2,000; tried stimulant meds for myself; stretched my equity loan to pay for scores of sessions of neurofeedback (a computer-based treatment in which a therapist helps you train your brain to function better); and even went on a five-day silent meditation retreat, which I only just managed to survive.
I fed my son fish oil capsules until the aftertaste made him rebel, subjected him to two days of neuropsychological tests ($4,000), hired pricey tutors and summoned my nerve to lobby public schools to grant him special accommodations, such as being allowed to chew gum while studying algebra. We did not, however, after due consideration, send in his hair follicles for lab analysis to detect heavy metals or purchase custom-made colored contact lenses, on the chance that his problem was not actually ADHD but a controversial perceptual disorder known as scotopic sensitivity syndrome.
I also skipped the dolphin therapy after learning enough to suspect that it was not only a waste of money but really unkind to the dolphins.
I've got plenty of company in my quest for non-pharmaceutical techniques. A 2003 survey of parents of children with ADHD in Boston found that 54 percent had tried non-medical treatments. Yet even though we may have lots of good reasons to distrust Big Pharma, medication is still the devil we know. It has many problematic side effects and carries social stigma, but it also has decades of research establishing its upsides and downsides.
This isn't usually true for the alternatives. Children's livers may be overtaxed by megavitamins. Too much ginseng can raise their blood pressure. Parents may exhaust their savings on brain scans and exercise programs that lack evidence of their effectiveness. And despite often-Herculean efforts on the part of their families, millions of kids may still end up fulfilling the direst outcomes of this diagnosis, including higher rates of high school dropouts, unemployment, teen pregnancy, car accidents, depression, anxiety and jail.
I was lucky: I was in a nice, supportive marriage, and my contract to write a book on the subject gave me a handy professional excuse to call up experts for advice. Even so, I joined many other parents in anxiously watching my son's self-esteem erode while a succession of teachers judged him lazy, troublesome and - they implied - poorly parented. If I, with all my advantages, had so much trouble dealing with the academic train wreck, how much can we expect of parents who may be divorced, working overtime and/or intimidated by hucksters online and off, including the flood of self-help books with such optimistic titles as "Dr. Bob's Guide to Stop ADHD in 18 Days?"
I am relieved to report that despite many setbacks, my son and I made some progress by the end of my year. Looking back, I suspect that his time on medication helped us out of a crisis and gave him a useful taste of what it felt like to have more self-control. It may also be true that our budget-breaking neurofeedback treatments helped curb his irritability and my anxiety.
At the same time, I discovered that some of the most effective interventions are also the simplest and cheapest. Such as educating myself enough to know how much of my son's behavior is truly within his control. And getting in the habit, with my husband, of finding something to praise about him every day ("Way to breathe!" we began, although we soon found more substantial causes for celebration).
Regular physical exercise, I found, can also be hugely helpful - and this strategy is backed by a significant amount of research. Russell Barkley, a leading ADHD researcher, cites studies showing that rigorous exercise can increase the brain's capacity for willpower and emotional self-control, arguably the most important skills lacking in many of the clinically distracted. So too, he says, can maintaining adequate levels of glucose, which has led me to stop pestering my wiry, active son about his many trips to the refrigerator.
Another useful (and cheap) strategy was abandoning my sheepishness around my son's teachers and principals and visiting them early, insistently and often. Despite growing awareness about ADHD (the National Library of Medicine lists more than 18,000 papers and articles on the disorder), the continuing depth of misunderstanding in schools can be startling. In one school district in Massachusetts, I was told by Harvard neuroscientist Todd Rose, teachers have even made ultra-restless kids wear lead vests to weigh them down.
Probably most important, I learned that it's key for a parent of a seriously distracted child to keep calm. Children with ADHD can be unusually provocative. Punishments, particularly the corporal kind, are notoriously ineffective. So whatever it takes to understand your own role in the family conflict and tone down your reactions may yield benefits that last a lifetime.
None of this has "stopped" my son's ADHD or my own. We still struggle and suffer, individually and together. I still take meds, on occasion, and he knows they're there if he decides they can help him again. Meanwhile, we play Ping-Pong, talk and laugh together more than we have for years, and, as much as a 15-year-old will tolerate, we even occasionally hug.
Our journey to this somewhat better place took a lot of work, a lot of persistent trial-and-error and a lot of self-criticism. And all of that, in turn, took a heck of a lot of time and attention - commodities in sadly short supply for many of us. Still, we did save on the ginseng, magnetic mattresses and dolphins.
Posted by BA Haller at 10:36 AM
Sunday, November 28, 2010
CBS Sunday Morning TV show. "Where's Molly?" is the poignant question a little boy used to ask many years ago. The answer to that question was a long time coming. The cover story is reported by John Blackstone:
If a picture is worth a thousand words, then the pictures of the Daly Family in the 1950s tell the story of a typical American family: The handsome husband, the perfect wife, and the happy kids.
But then, the pictures change . . . and a family secret was born.
"I would often look at a photo, and I'd say, 'Tell me again who's this,'" said Jeff Daly. "'Well, that was Molly.' 'Where Molly now?' 'She's not here anymore.'"
When older brother Jeff was 6, Molly disappeared. For a while Jeff asked constantly: "Where's Molly?"
He stopped asking after being told repeatedly by his mother he had to forget his baby sister.
"I was fairly, you know, fairly well brainwashed," Daly said. "I think I can say that Molly never crossed my mind for 20 years, maybe 30 years. I mean, she effectively had been shoved away. I'm told I can't do anything more. So, when I hit my teenage [years], my 20s, my 30s, I never really thought about Molly."
That is, until someone else from his past came back into his life.
Cindy Thompson grew up with Jeff in Astoria, Ore. The two even dated in middle school. They met again, in 1994, after their 25th high school reunion.
"I had not seen him in probably 25 or 30 years," said Cindy. "And just naturally thought that he had contact with his sister."
"And one of the first things she said to me was, 'How's your mom? How's your dad? And what's Molly doing?' And I almost fell off the chair," Jeff said. "'How, how do you remember Molly?'"
"I said, 'Everybody knew about Molly,'" Cindy said. When Jeff asked her what she knew about his sister, Cindy replied, "Well, she was sent away. I don't know where she went. And I never heard what happened to her. Is she still alive?"
Jeff didn’t know. He said it almost ended his relationship with Cindy right there: "Cindy was so upset saying, 'How could you not know where your sister is? How do you not know how she's doing?'"
Jeff and Cindy's relationship grew, and they got married. But it would take another ten years before the mystery of Molly's disappearance began to unravel.
And it was only after Jeff's parents, Sue and Jack, passed away . . .
"When my father died, Cindy said, 'Time's up. I'm gonna find Molly,'" Jeff recalled. "And we actually found in his wallet a little card that was sort of a cheat sheet. It had his parents' birthdays and Social Security numbers. It had mine. It had Molly's name, Molly's Social Security number and her birth date."
Turns out, Jack Daly also kept a file hidden away about his only daughter. And within 24 hours of Jack's death, the mystery of "Where's Molly" was solved.
Cindy Daly started making phone calls, and on her third call she found the group home in Hillsboro, just outside of Portland, where Molly was actually living.
Three days later, Jeff Daly reunited with the sister he last saw when she was just shy of her third birthday.
Molly was now a 49-year-old woman.
"I wasn't sure what to expect," Jeff said. "But the first time I saw her, it was pain. I felt pained that I hadn't seen her. I knew that I was wrong."
"Knew that you were wrong not trying to find her sooner?" asked Blackstone.
"Yeah, that here, indeed, is this individual that has personality, and she's my sister. And I let her go for 47 years without ever being part of our life."
Because Molly couldn't tell Jeff and Cindy about those missing 47 years, they set about filling in the details, which brought them to the institution where Molly was sent back in 1957: the Oregon Fairview Home.
Fairview has now been closed for almost a decade. The buildings where Molly and thousands of other children lived are in decay. But a film that shows what life was like here in the 1950s gave Cindy and Jeff a disturbing look at how Molly spent her childhood here.
And the last thing Jeff and Cindy expected to see in the beginning of "Fairview 1959" was Molly herself, at age 5.
"When we saw that, we crumbled," Jeff said.
At the time, the film was meant to be a testament to the state-of-the-art care given to patients with intellectual disabilities.
Fairview, founded in 1907, was originally named the "Oregon State Institution for the Feeble-Minded." And it was hardly alone. By 1962, there were 123 state institutions around the country.
James Trent, a professor at Gordon College and the author of a history of America's treatment of those once called "mentally retarded," says Molly's parents undoubtedly acted on what was common advice in the 1950s.
"After World War II in the early '50s, you increasingly had physicians who would tell parents to put their children almost immediately in institutions after they were born if they had an apparent disability," Trent said.
"Most physicians would tell them for the good of the other children in the family, for the good of the stability of the family, it was best to put the disabled child in a state institution," said Trent.
Jeff Daly says that was the way it was done with his sister: "The doctors told my parents, 'It's okay. Let Molly go to Salem. She'll be in an institution. She'll be better off there.'"
But as the Fairview film painfully illustrates, Molly was not better off.
Jeff says that while Molly had some minor disabilities, he believes that when she went into the institution she became "institutionally retarded."
"The environment created her, forced her into being what everybody else in an institution was, which were people surviving," he said.
In combing through Molly's records, the Dalys discovered that, despite the family mandate to forget her, through the years, Molly did have some family visitors.
"My mom went there once from what we understood," Jeff said. "We just found a little note in her records that mother had visited. But, other than that, she didn't visit."
"Was it shame that kept your mother from doing this?" Blackstone asked. "Was it just that she didn't want to acknowledge even Molly's existence?"
"I just have a hard time understanding," Jeff said. "To send her away and say, 'No more conversation. She is not part of our lives. We're not gonna talk to her about it.' So, whether that's shame? It's a horrible dilemma I think that my mother had to go through."
And at first, Molly's father visited often, until Fairview's staff advised him to stop, because Molly would become inconsolable after he left.
But Jack Daly found an ingenious way to continue seeing his daughter . . .
"He did go back," said Jeff. "It was only a way that I suppose my dad could have figured out. He went back as a clown."
Jeff's father - an executive at the Bumblbee Seafood Company - founded a troupe called the Astoria Clowns in 1957, the very year Molly was sent away. The troupe traveled around Oregon, marching in parades and entertaining children wherever they went.
And they visited Fairview.
"He was able to have this relationship with Molly in disguise: Painted face, an orange wig, wearing the clown outfit," said Jeff. "But he was able to still get back there and see his daughter."
By profession, Jeff was a freelance cameraman who sometimes worked for CBS News. Now, he's made a film called "Where's Molly" about the search for his sister. He hopes his story encourages others to reunite with siblings lost because of the wisdom of earlier times.
He's failed, however, to convince his own younger brother, Tim, to spend time with Molly.
"I've not only lost my brother now, but, he's missing - he's missing out on a great opportunity to have a sister," Jeff said.
For Jeff, finding his sister has done much more than solve a mystery . . . according to his wife Cindy, he's changed immensely. "He has, as one person said it, 'filled a hole in his soul.' And it really did."
"I have family," Jeff said. "I've lost some family. But I've got family. And I think that the family that I have now needs me, and I'm glad to be there for her. That's the beauty of it. It's a lovely reward to be able to give back and to take care of your little sister."
Posted by BA Haller at 12:24 PM
From The Detroit News:
Autism legislation passed by Democrats in the state House but once dead in the water in the Republican-controlled Senate will get a second look Tuesday after pressure from Michigan's lieutenant governor-elect, Rep. Brian Calley of Portland, whose daughter is diagnosed with the complex neurobiological disorder.
The House legislation would require insurance companies to cover autism therapies, which can cost as much as $50,000 annually. According to the Autism Society, 23 states have adopted similar reforms.
Calley released an emotional YouTube video this week in which he vows he "will no longer remain silent" on the need for autism insurance reform, which he says can save the state money.
Matt Marsden , spokesman for Senate Majority Leader Mike Bishop , said the issue will get a hearing — at which Calley will speak — before the Senate Republican Caucus next week.
Sen. Randy Richardville , the majority leader-elect who co-chaired hearings on autism last summer, said the House-passed legislation is unacceptable because it mandates insurance coverage. He wants to look at alternatives, such as riders on insurance policies, and would impose dollar limits on the cost of care.
Posted by BA Haller at 12:17 PM
Kelowna Capital News in Canada:
When Katie Johnston came to Kelowna as a summer student, she got a job working with people with disabilities, helping them get out on adventures like hiking, biking and kayaking.
By the end of the summer, the New Brunswick native continued to volunteer at the Community Recreational Initiatives Society (CRIS).
The following year, she was hired full-time by CRIS, the community group that helps disabled people get out into nature and push their limits.
“It’s pretty amazing how something as simple as giving an hour or two of your time to go out hiking in his beautiful area we live in makes such a huge difference,” said Johnston, now the executive director of CRIS. “Seeing the difference it makes in people’s lives is inspirational. It really puts your worries and problems into perspective.”
For the past nine years CRIS has been helping people with disabilities get out into the wilderness on day trips or longer excursions.
The group has adaptive hiking, kayaking and biking equipment and teams trip leaders with disabled persons to take the participants where they can’t go on their own.
They utilize popular spots like the Mission Greenway, the Kettle Valley Railway and Knox Mountain and have gone as far as Vancouver Island and the Bowron Lakes for longer trips.
Johnston says it makes a big difference in the lives of people who might spend a lot of time inside.
“We’ve had participants who have been reluctant to go on an outing or were worried that they felt they couldn’t do it,” she explained.
“But all of a sudden they are trying things. They really come to life.
“They are pushing their limits and getting back into society. It only takes one outing to break down those barriers and open their eyes to what they can accomplish.”
To help spread awareness of what CRIS offers, the volunteer-based organization has partnered with Shoppers Home Health Care to host a one-day information session.
The event, on Dec. 3, coincides with International Day of Persons with Disabilities.
“It’s really for awareness. Getting people aware of what we do and the impact that we make. A lot of our participants are very open about what it means to them to be able to access the outdoors. These are some of the greatest people I’ve ever met,” Johnston said.
The event will be at Shoppers Home Health Care in the Capri Mall, from 10 a.m. to 2 p.m., on Friday and will include many occupational and physiotherapists as well as participants in the CRIS Adapative Adventures program.
Posted by BA Haller at 12:15 PM
From Israel 21c:
On Nov. 22, for the first time in its history, autistic soldiers joined the ranks of the Israel Defense Forces (IDF).
Zohar Pe'er (21) was one of a group of 10 young men with autism who became IDF soldiers.
Zohar doesn't generally express much emotion, but his mother, Efrat Etzion-Pe'er, says he whispered to her "This is great," as he prepared for the big day. She said she was waiting expectantly to see her son in uniform, adding, "He doesn't show many signs, but I know he's waiting for the ceremony and wants to wear the uniform."
Following a short recruitment ceremony, the new soldiers headed to various equipment bases to begin volunteering in the workshops.
The decision to allow the autistic teens to volunteer was brought about by teachers at the Leah Rabin Middle School in Petah Tikva, which caters to autistic teens. Teachers at the school believe their students have much to contribute to the state.
Captain Moran Cherney-Cohen, who chairs the Central Command's volunteer department, says that "In addition to professional trainers who will accompany them [the new recruits] during their first days, there will also be officers who underwent special training with them at all times."
A few months ago the Hebrew press reported that youths suffering from mental disorders can now volunteer in the IDF as well.
Posted by BA Haller at 12:10 PM
DigitalBurg in Mo.:
WARRENSBURG, Mo.-- “You can’t be in here because I don’t know how to teach you.”
Every person has a defining moment, a turning point that changes his or her life forever. For Judy King (pictured), who was born without knuckles, this moment came when she heard those words from her high school typing instructor.
“Judy was born with severe birth defects,” said Cathy Barr, director of the Missouri Center for Career Education at the University of Central Missouri.
Things that people take for granted are difficult for King, who is also hearing-impaired. She explains that even picking up a paper clip is tricky.
“She has worked through a number of prejudices with people underestimating what her capabilities are,” Barr said.
Upon entering King’s roomy, softly-lit office, you can see papers and folders stacked precariously on her desk, and yellow Post-It notes stuck on her computer screen and file cabinet. Intelligently messy, yet organized. She unclips some photos from the file cabinet and proudly shows off various snapshots of her nieces and nephews.
“They are so adorable,” she beams. “But then again, I’m biased.”
King, a Sedalia resident, was in-between jobs when she started working for the University in 1997. She has since then loved every minute of it.
Initially work-ing in the Union, she served several positions, including man-aging a copy center for the students, doing the graphics for the facilities office, and coordinating weddings for the Alumni Chapel on campus. After seven years, she moved on to become part of the Missouri Center for Career Education (MCCE) staff in the Gaines Building on campus.
“She’s very good at working with a wide variety of clients,” said Nathan Wittmaier, coordinator of publications at MCCE. “She makes sure that the clients’ needs are met, whatever that takes. And if it’s something that she can do on her own, then she does it and gets it done… no fuss, no muss.”
King is the project specialist for products and programs at MCCE.
“Her teacher didn’t see how a person with her hands could type,” Barr said. “Ironically, Judy has been in the printing and graphics trade for many years, and spends all day at a keyboard.” Barr pauses and swivels in her office chair. “She’s got remarkable tenacity, and she’s an idea person, too. She’s constantly coming up with things that I have to tell her ‘no,’” Barr laughs as she uses the scolding-a-child tone.
King’s first job was as a typesetter for the Sedalia Democrat newspaper. “I went into graphics by fluke,” laughs King. “I started laying out ads, and I had a pretty good eye for layout – what looked good, what didn’t look good… and it blossomed from there.”
After working at MCCE for a while, her director at the time told her in one of her evaluation sessions that she should consider taking classes. So King put some thought into it and told herself, “Well just take one class and see how it goes.”
She was instantly hooked. One class led to another, and another. Pretty soon, King found herself almost having enough hours for a degree. Because of the classes, King feels she has upgraded her skills and has become an all-around better employee.
“It started out as a time-filler and to appease the director,” King said, “but it turned out to my benefit.”
In 2009, King earned her bachelor’s degree in graphic arts technology management and she is working on her master’s degree in education technology.
“You’re never too old to go back to school,” she said. “I graduated with my bachelor’s at the age of 60, and I’ll be 62 when I graduate with my master’s.”
King is also, for the first time, teaching an online class on assistive technology for special needs. She is happy with her nine students enrolled in the class.
“It’s a small enough class that I can manage it, plus take my classes and work at the same time,” she said.
Shawn Knoblock, a graduate student in educational technology, said he didn’t know much about disabilities when he started King’s course.
“This is the first class I’ve taken on it, learning about the different aspects, different software, and different technologies that go with being disabled. It’s interesting.”
Asked about any difficulties she’s had to overcome to accomplish this much, King hesitantly lets her barrier down to share a piece of her past — the painful moment that defines who she is today.
“I graduated from a little old country high school in Hughsville, Mo.,” King said. “I think there was a total of 14 in my senior class. My first eight grades, I was in a one-room school house.”
King looks deep in thought. “I had an experience in my high school class because of the way my hands are.” King extends her hands and gazes at them, while continuing to talk. “They are not fully developed, like, I can’t make a fist,” she balls up her hand, “because I don’t have these knuckles here so I can’t —” She stops abruptly; her eyes begin to water as her voice becomes shaky with emotion. “So my teacher at that time said, ‘You can’t be in here, because I don’t know how to teach you.’” Her voice mirrors the pain in her eyes.
She clears her throat. “I had not said anything to my parents for several days, but went ahead and went to class, even though I just sat there.” She heaves a sigh as her voice struggles to continue.
“So at the supper table one evening, my dad was asking how my classes were going, so I finally told him what had happened in the class. And he said, ‘Well, you keep going to class and don’t worry about it.’
“Well, unbeknownst to me, before he went to work the next day, he went in and spoke with the superintendent and the teacher. He told them, ‘My daughter wants to take typing. You’re the teacher. Now teach her.’”
King shifts in her chair as she recalls what her father said. “‘You tell her what she needs, and she’ll take care of the rest.’”
She stops speaking for a bit. “I wound up getting the typing award,” she says, as she smiles through sad eyes. “It just goes to show that no matter what kind of handicap you may have, if you let that determination mode kick in, you can do anything.”
Unable to hold back any longer, she breaks down. Tears freely roll down her flushed cheeks like raindrops on a window pane. She sits there unmoving while she cries in silence with her hands folded in her lap, looking straight ahead.
Attempting to compose herself but failing, King continues emphatically, “Which is why with education, I don’t ever want to hear a teacher say, ‘I don’t know how to teach you.’ I don’t ever want to hear that a child had to go through that.”
King sniffs and apologizes. She starts laughing through her tears at her unexpected breakdown. “I don’t even have any Kleenex back here,” she quips.
From her poignant experience, King knew what she had in mind when she began her master’s — to educate teachers so that when a special-needs student comes in, they know how to accommodate that student.
“Our educators need to be educated themselves,” King said with newfound power to her voice. “No student should ever have to be intimidated or inhibited.”
Posted by BA Haller at 11:42 AM
From Adele Horin, columnist at The Sydney Morning Herald in Australia:
When aged care workers tell people what they do for a living the usual response is: ''I don't know how you do it.'' It is said with admiration as if only a warm, self-sacrificing, special person could stomach the job of looking after old people with dementia.
The same sympathetic response greets disability workers when they admit to working with intellectually disabled children who cannot feed or toilet themselves: ''I don't know how you do it. You must be a saint.''
They are not saints. They are trained professionals. And now they are demanding to be paid like trained professionals. For decades the work of the nation's 150,000 or so community sector employees - 85 per cent female - has been undervalued and underpaid. Everyone thinks they are wonderful - the Prime Minister included. But no one wants to pay them what they are worth.
Ultimately their salary is paid by us - the taxpayer. And taxpayers worry more these days about budget deficits than about the low wages of the workers who care for their elderly parents and their toddlers.
The bigger the salary taxpayers pull in and the more plush their city office, the more likely they are to be worried by budget deficits, and the less likely to support proper government funding of community services and the people who provide them.
Rape crisis counsellors, youth workers, family support workers and the rest who deal with society's broken, damaged, frail and forgotten are not only poorly paid but are rarely found in plush city offices; rather many work in dumps, demountables and cubby holes for charities and other non-government organisations that are wholly or largely funded by government grants.
The federal government in its submission last week to an important pay equity test case urges Fair Work Australia to carefully consider the wider costs to the nation's budget of granting community workers the better pay deal they seek. The case presents the best opportunity to close the gender pay gap since the 1972 equal pay decision.
The new Fair Work Act makes it possible for the first time, federally, to test pay rates in one job against those for comparable work, and to test by how much ''women's work'' has been undervalued.
But the government, instead of whole-heartedly supporting the unions who have mounted the challenge, is issuing dire warnings and threats. Large wage increases, even if phased in, could blow the government's return to budget surplus, it says. ''If any additional government funding is provided, it would likely come at the expense of other government-funded services,'' it warns.
It will not be a new fighter plane that will be jettisoned but a raft of services for the homeless, domestic violence victims and so on.
Nothing can get in the way of the government delivering its promised budget surplus, not even the chance for Labor to lift the pay of this historically undervalued predominantly female workforce to parity with men doing work of comparable value.
Aged care and disability workers and the rest are being asked to sacrifice themselves for the sake of a fiscal surplus.
In these relatively good economic times, the government maintains it cannot afford to pay community workers a decent salary, just as in the decade of the Howard government huge receipts from the mining boom were squandered on tax cuts for the better off while community workers fell behind.
Community workers might well ask if their time will ever come. Not in bad times, not in a recession surely, and not under a Coalition government with Work Choices in its DNA. If not now when, with a female Labor prime minister, who says she understands but unfortunately has higher priorities.
The government had offered early support for the case. It had agreed to back the Australian Services Union application for an equal remuneration order for community and disability workers. It had committed to provide evidence and research for the case and to support an agreed statement of fact.
It supplied in its submission plenty of evidence for the underpayment of this workforce, as promised. But it has baulked at paying up.
An agency such as Mission Australia faces a $3.735 million increase in salary costs under a proposed new salary scale. It doubts the government would pay its share of $2.518 million and warns that services will be cut or closed.
Community workers are not public servants. But as governments have outsourced more work to the charitable and non-government sector over the years, many community workers do virtually the same work as public servants - only for much less pay. For example, social workers employed by government earn $30,000 to $40,000 more than social workers employed by non-government agencies working on the same programs.
The huge turnover and critical shortages in aged care and childcare are harbingers of times to come. Childcare workers cannot afford childcare for their own children and aged-care workers retire with little superannuation. Australia will need more community workers, especially in aged and disability care, as the population ages and the pool of workers shrinks. We will not be able to attract them with peanuts and patronising praise for their saintliness.
Either the government should rethink its spending priorities or its fixation with budget surpluses. It would be a pity if our first female prime minister, and a Labor one at that, resiles from a historic chance to help under-paid, mainly women, workers gain wage justice.
They cannot eat their haloes.
Posted by BA Haller at 11:33 AM