AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Thursday, 24 October 2013
NATIONAL
Biden: Country on cusp of mental health changes. CBS News (10/23)
BOSTON
Vice President Joe Biden says the country is on the cusp of what he called "remarkable changes" in the treatment of mental illness.
Speaking at a forum in Boston on Wednesday, Biden said that as a result of President Barack Obama's health care law, more people have access to care for mental illness. The law bars insurance companies from denying coverage due to preexisting conditions like bipolar disorder.
Biden was joined by Health and Human Services Secretary Kathleen Sebelius and former U.S. Rep. Patrick Kennedy. The event marked the 50th anniversary of President John F. Kennedy's signing of the Community Mental Health Act.
Sebelius said there's still work to be done to eliminate the stigma around mental illness. She said the stigma can be a barrier to treatment.
© 2013 The Associated Press. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.
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Bears’ Marshall helping to destigmatize mental health conditions. Chicago Sun-Times (10/23) (Patrick Finley)
BOSTON — Brandon Marshall wove past rows of trees, firecrackers of red, peach and burnt orange, and into the yellow building of the top psychiatric hospital in the country.
Upstairs at the McLean Hospital administration building, he stopped to say hello to old friends, to thank them for their help.
He was an outpatient there for three months in 2011, treated for borderline personality disorder.
On his way out the door, he scribbled a friendly note for a woman whose office was empty, placing it on her desk.
Three hours later, dressed in a gray plaid suit, black tie and a green bracelet given to him by Patrick Kennedy’s young stepdaughter, Marshall walked into the ballroom at the John F. Kennedy Presidential Library and Museum.
In his world of mental-health awareness, it was the Super Bowl.
Or, as Vice President Joe Biden said, the World Series — with the real one down the road.
“It’s the who’s-who in our world,” said the Bears wide receiver, whose Brandon Marshall Foundation raises awareness for mental illness. “It’s everyone. It’s overwhelming right now.”
Biden and Secretary of Health and Human Services Kathleen Sebelius spoke Wednesday night to launch the Kennedy Forum, which former Rep. Patrick Kennedy founded to celebrate the 50th anniversary of his uncle signing the Community Mental Health Act.
The irony wasn’t lost on Marshall: a room filled with discussion about mental health, a topic few feel comfortable speaking about.
“We’re here celebrating 50 years of progress,” Marshall said. “This is the last piece of legislation John F. Kennedy signed. But it’s still a taboo topic. That’s disturbing because it affects all of us.
“None of us wants to talk about it. We’re afraid. We need to take it from a taboo topic to an everyday conversation.”
Marshall did that two weeks ago, wearing lime-green cleats during Mental Health Awareness Week.
His foundation received more than 100 donations, from $5 to $10,000.
Marshall estimates the attention was worth at least six figures.
“That was a huge stage for us,” Marshall said. “Not just advertising, but creating conversation, creating dialogue, about something that affects all of us.”
Brandon Marshall Foundation CEO Louie Correa, Marshall’s guest at the forum, said the goal is to make the foundation “the Livestrong of mental health” — only without Lance Armstrong’s embarrassing finish.
The room Wednesday was a good place to start.
Marshall — who spends two days a week, minimum, in his foundation’s Chicago office — was giddy with excitement.
“They’re the right people to really help us get to the next level,” Marshall said. “Our goal is to be the pre-eminent foundation in the mental-health community.
“This is my purpose. This is not something I’m doing for attention, something I’m trying to do to make myself look better. I’m really trying to be a servant to our community.”
Dr. Jeffrey Lieberman, president of the American Psychiatric Association, said a celebrity speaking about mental illness has tremendous weight, especially when encouraging people to seek help and talk openly.
“Apart from government funding for research, it’s the most valuable thing you can have,” he said. “It is essential and enormously valuable in terms of destigmatizing mental illness and encouraging people who need it to seek care and facilitating access to care.
“This is somebody whose profession is based on machismo being courageous and fearless. And to acknowledge they have some psychological vulnerability, which is the reality, is really extraordinarily heroic.”
There were times, Marshall said, when we looked at his football skills as something that served only him.
That’s changed, he said.
“Is it for me?” he said. “Or is it to use those skills for something like this?
“When you have a purpose, when you know your purpose, it’s stimulating.
“It’s fulfilling. There’s no better feeling in the world.”
Email: pfinley@suntimes.com
Twitter: @patrickfinley
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STATE/LOCAL
Mental health and guns. The Baltimore Sun (10/23)
If you believe that early intervention by mental health professionals in the lives of people with serious psychiatric disorders will prevent future mass shootings like the ones in Newtown, Conn., or Tucson, Ariz., you probably are in for a disappointment: The truth is that no public health effort can prevent such tragedies entirely. That's because only a tiny fraction of the millions of Americans who suffer from serious mental illnesses will ever become violent, and there is no way of predicting who will be. Inevitably, some people fall through the cracks of even the best designed public mental health programs.
That doesn't mean that a Maryland initiative to create a new center to identify and treat people with psychotic symptoms early in the course of their illnesses is not urgently needed, however. Founded with a $1.2 million appropriation from the state this year, the Center for Excellence on Early Intervention for Serious Mental Illness aims to catch the earliest signs of psychosis in people suffering from serious chronic mental disorders and to intervene before those conditions create havoc in the lives of patients and their families. That not only will help many people with serious mental disorders, it's also good public health policy.
The recent, widely publicized mass shootings involving people suffering from mental illness have reignited a long-running debate over gun control laws in this country. But they have also brutally exposed the flaws in the nation's public mental health system. Time and again we hear stories of people who were clearly having mental difficulties, yet no one took notice or did anything to help them. That's a reflection of society's neglect and ignorance of mental health issues even in cases where someone obviously is ill. In a society more aware of mental health issues it would be incumbent on anyone who sees a family member, friend or colleague suddenly start behaving strangely to at least get that person evaluated and potentially have them hospitalized before something worse happens.
It must be said that something worse is hardly ever a homicide, much less the kind of mass shooting that makes national headlines. Such incidents are extremely rare. Much more common are suicides or violent but non-fatal encounters with relatives or law-enforcement officials that can profoundly disrupt the lives of mentally ill people and cause them to lose their jobs, their homes and their ability to lead independent lives. That's why Maryland's initiative aims to address the problem at the most critical time, which is when the earliest symptoms of psychosis appear or the person suffers his or her first psychotic episode. At that stage of the illness, health professionals have very good treatment options available.
It's somewhat ironic that the National Rifle Association, in attempting to deflect attention away from the easy availability of guns by focusing on the mental health issues behind some recent mass shooters, has become one of the greatest allies of mental health advocates. This despite the fact that fewer than 5 percent of homicides are committed by people who are psychotic. When it comes to mass shootings, that proportion rises, but only to about 30 percent.
What's needed is greater public awareness of how to recognize the signs that someone is slipping over the edge. Many people knew the young man accused of shooting former Rep. Gabriel Giffords and others in Tucson had been acting strangely in the months leading up to that incident. The college he attended had kicked him out of school and demanded a letter certifying he had visited a mental health professional before he could return. Yet school officials never required him to be evaluated nor did they notify anyone else of his condition. In the case of the Aurora shooter, a school psychiatrist did raise an alarm, but then the young man dropped out of school and the authorities failed to follow up on his case. Because he no longer was a student there they took the position that he was no longer their problem.
These are complicated and difficult issues for which there are no easy solutions. The one thing we can be reasonably sure of is that Maryland's initiative, while it may help many people with serious mental disorders, isn't going to make us safer from attacks by deranged people. The only thing that will do that is a more rational gun control policy that makes it far more difficult than it is today for firearms to fall into the wrong hands, be they those of criminals, mentally ill people, children or careless adults.
But in cases involving serious mental illness, early intervention remains the key. Assisted outpatient treatment could make a big difference, but Maryland, unlike states such as New York, doesn't have a law allowing judges to require that people with mental illnesses continue outpatient treatment after a hospitalization or one that allows heath care providers to take them back into custody and re-evaluate them after their release. Such laws have been shown to be effective in reducing the incidence of homelessness, arrests and jail time among the chronically mentally ill. The bottom line is that we need a more compassionate but also more aggressive policy in intervening early in the lives of people with serious mental illnesses. When people get to the point where they spiral out of control because of an untreated mental health condition, it's often too late.
Copyright © 2013, The Baltimore Sun
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Virginia’s mental health system needs money; candidates differ on how to provide it. The Washington Post (10/23) by Tom Jackman
When people talk about improving Virginia’s mental health system, they inevitably return to one word: money. Money for treatment centers and hospital beds, money for staff, money for youth programs, money for housing. Money that has been cut significantly in recent years.
The major-party candidates for governor of Virginia agree that mental health systems need more resources. But their approaches differ greatly, based in part on how they view the Medicaid expansion of the new health-care law in Virginia.
Democrat Terry McAuliffe favors a Medicaid expansion wholeheartedly. He says it would provide new health-care coverage for about 400,000 Virginians and would increase money for mental health treatment.
Republican Ken Cuccinelli II opposes a Medicaid expansion completely and says McAuliffe’s estimates of its effect on Virginia are greatly overstated. Cuccinelli wants to increase state funding for mental health, but he would do so by shifting current Medicaid funds from other health-care areas. He also said he would target waste, fraud and abuse and use the savings to bolster options for the mentally ill and the intellectually disabled.
Cuccinelli has been personally involved with the mental health system. As a newly minted lawyer, he began volunteering to represent people with mental illness in civil commitment hearings. As a state legislator and attorney general, he worked to improve the commitment system, both after the 2007 Virginia Tech shootings and after a friend and neighbor, Fairfax County police officer Michael Garbarino, was fatally shot by a mentally ill teenager in 2006.
After the Virginia Tech shootings, in which a mentally ill student from Fairfax killed 32 students and teachers in 2007, the state General Assembly passed reform legislation. The emergency evaluation process improved; the standard for involuntary commitment was eased; mandatory treatment rules were tightened; and community mental health services were better funded.
But Virginia cut its budget for mental health services by 9 percent between 2009 and 2011, according to the National Alliance for Mental Illness. In Fairfax, the most populous jurisdiction in Virginia, the Community Services Board, which handles many cases of mental illness, lost $16 million in funding in the past five years.
Recent high-profile incidents in the District — including the Navy Yard shootings and the police shooting of a woman who appeared to try to breach security at the White House and U.S. Capitol — have cast a spotlight on mental health issues nationwide.
Although Cuccinelli’s platform seeks to cut state funding in many areas, he wrote, he took a different tack in a five-page analysis of the state's mental health system. “We need to actually commit to spending money on mental health reform,” he wrote. “This is an area where I am willing to invest funds to develop a high quality care program.”
McAuliffe estimates that accepting the Medicaid expansion would bring in $21 billion in federal funding and free up $500 million from the state’s general fund over four years.
Cuccinelli says he would rely on tort reform and reductions in the cost of liability insurance — in addition to “waste, fraud and abuse programs” and efforts to redirect Medicaid funding — to free up money for mental health care. He does not have a dollar figure on what such efforts would produce, but his campaign estimated that as much as 10 percent of state health-care spending could be redirected to mental health and intellectual disabilities if waste, fraud and abuse were eliminated.
Cuccinelli also favors revising Medicaid spending to shift more dollars to mental health.
The candidates agree that improving the mental health system will yield savings elsewhere in the state budget by reducing the costs of homelessness and hospitalization. They also agree that more mental health professionals are needed at all levels, from psychiatrists to mental health nurses, to improve the system’s responsiveness. Cuccinelli and McAuliffe support emphasizing and investing in higher-education programs to produce more psychiatrists and mental health nurse practitioners. Cuccinelli also supports streamlining the professional licensing process.
Housing for people with mental illness who do not need full-time care has always been a tough problem for social service agencies, and many homeless people suffer from mental illness. Cuccinelli proposes using “the auxiliary grant,” a little known means of supplementing Social Security payments for those in assisted-living programs or adult foster care. He says he would push to make greater use of the grant and to have the money distributed to individuals, rather than institutions, to be spent as the individuals see fit.
McAuliffe said he supports increased spending on permanent supportive housing, in which residents pay subsidized rent to live in houses or townhouses while stabilizing their lives and becoming established in jobs. The program is promoted by the Virginia Coalition to End Homelessness.
After the shootings at Virginia Tech, the state General Assembly eased the standard for involuntary commitment for mental health reasons, but the number of people committed for treatment did not rise. Cuccinelli wants the standard to be relaxed further, to a finding of “in need of treatment,” instead of demonstrating a “substantial likelihood” of harming the person’s self or others.
McAuliffe said he does not “believe the governor or legislature should be dictating to doctors and patients which types of treatment they should support.”
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Apartments Accused Of Reverse Discrimination. Disability Scoop (10/24) (Shaun Heasley)
An apartment complex designed to accommodate those with disabilities is under fire from federal officials for having too few typically-developing residents.
The Apache ASL Trails apartments in Tempe, Ariz. were built to meet the needs of individuals who are deaf. Every unit is wheelchair accessible, blinking lights indicate when the doorbell rings or when the garbage disposal is on and a videophone helps residents keep in touch with friends.
But after the U.S. Department of Housing and Urban Development kicked in $2.6 million to help fund the project, the agency is now accusing the complex of discriminating against those who are not deaf, reports KSAZ.
The federal housing agency wants 75 percent of the units to be rented to individuals without disabilities and that has residents and lawmakers up in arms.
“To basically say there are too many disabled people here is just nuts,” U.S. Sen. Jeff Flake, R-Ariz., told the television station.
The state’s housing director said he’s trying to work with the federal government to resolve the issue, but hasn’t made much progress. In the meantime, those living at the complex are in limbo.
“As a deaf person, I feel like I have a right to live where I’d like to live,” said resident George Sierra.
Federal officials declined to comment at this point, but told The Arizona Republic last month that they are looking for a “win-win conclusion.”
~~~
INTERNATIONAL
Eccles couple guilty of trafficking servant girl. BBC News (10/16)
A couple who trafficked a 10-year-old girl to the UK who was repeatedly raped and kept as a domestic servant for nearly a decade have been convicted.
Ilyas and Tallat Ashar brought the girl, who is deaf, from Pakistan and kept her at their home in Eccles, Salford, where she slept in the cellar.
Ilyas Ashar, 84, was also found guilty of 13 counts of raping the girl, now in her 20s, who was found in 2009.
The couple will be sentenced at Manchester Crown Court on 23 October.
Tallat Ashar, 68, was found guilty of trafficking and benefit fraud at an earlier trial, as was her husband.
This can now be reported after the lifting of reporting restrictions, following Ilyas Ashar's conviction for rape at a retrial.
Sign language
The victim, who cannot be named for legal reasons, was only found after trading standards officials visited their Cromwell Road home investigating allegations of illegal activity.
She was found in the cellar, which was described as "sparse, cold and damp".
Police said the girl cleaned and cooked at the house, and was taken to other houses belonging to the family to carry out domestic chores.
Details of the victim's ordeal only emerged after she was taught sign language, enabling her to be interviewed by police.
Thousands of pounds in benefits were claimed in the victim's name and a number of bank accounts were set up using her details, police said.
The couple's daughter, Faaiza Ashar, 46, was also found guilty of benefit fraud at an earlier trial.
Judge Peter Lakin warned Ilyas Ashar to expect a "substantial prison sentence".
'Mystery and concern'
Ch Supt May Doyle, from Greater Manchester Police, described Ilyas Ashar as "pure evil".
She praised the victim for being "remarkably courageous" in coming forward and giving evidence against him.
She added: "She's being supported, living a good life now, she's achieving her potential - she's a bright girl."
Ian Rushton, from the Crown Prosecution Service, said the victim was "one of the most vulnerable" they had ever encountered.
"When she was first brought to the UK she was just a child," he said.
"She was unable to hear or speak and had no formal sign language through which to communicate, no family or friends to turn to, had never been to school and had no knowledge of this country's culture and society.
"She was used as forced labour by the Ashars - ill-treated and exploited financially and repeatedly raped by Ilyas Ashar. We have been determined to bring them to justice for this catalogue of abuse."
The passport used to allow the girl into the UK claimed she was 20, and it was a matter of "mystery and concern" how immigration officials at Heathrow did not spot the difference in age.
Hannah Flint, from Stop The Traffik, said: "It is vital that proper training is provided for police, border agencies, teachers, lawyers and other employers to help them spot the signs of human trafficking.
"When she first came in, and that was over 10 years ago, a lot of lessons have been learned since then but more still needs to be done - it's not consistent across the country."
~~~
EMPLOYMENT
Study: Workers with disabilities paid 10% less. USA Today (10/23) (Jayna Omaya)
WASHINGTON — Workers with disabilities are paid about 10% less than other workers in similar jobs, and 8% less in total compensation, including wages, health insurance and vacation time, according to a new Cornell University study.
Research by Cornell's School of Industrial and Labor Relations found that people with disabilities are more likely to opt for jobs that pay lower wages but offer strong benefit packages.
"So you might imagine someone taking a job for $40,000 with health insurance or a job for $60,000 without health insurance," Kevin Hallock, director of the Institute for Compensation Studies at Cornell, said during a presentation at a conference on disability employment Wednesday in Arlington, Va.
Workers with disabilities also are overrepresented in manual labor jobs and underrepresented in white-collar fields. The study found transportation, production, and office and administrative support were among the top occupations where people with disabilities were employed.
Skilled jobs, including management, business and finance occupations, employed the lowest number of people with disabilities.
The Cornell research has some limitations: Only full-time male workers were surveyed to determine wage gaps because researchers wanted to isolate a similar group of individuals without introducing other variables such as gender.
Adriana Kugler, former chief economist at the U.S. Department of Labor, said at a panel discussion during the conference, "It is very, very key that we (also) focus on this other gap, which is the unemployment gap."
Only 21% of people with disabilities are either employed or actively looking for a job. Among those seeking work, the jobless rate was 13% in September 2013 compared to just over 7% for those without disabilities.
Some proposed solutions to cut the wage gap for disabled workers include more efforts by employers to raise awareness, improve management training and expand services and programs to accommodate employees with disabilities. Companies also should do a better job of measuring wage gaps involving their disabled employees, the researchers said.
"Employers need to be looking at wage gaps in their own workforce," said Linda Barrington, executive director of Cornell's Institute for Compensation Studies. "A lot of companies do that for gender, they do that for race, ethnicity. People with disabilities — and (the) pay gap for people with disabilities need to be included in every company's checklist as they go through and say 'do we have fair pay practices.'"
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SPORTS
Marathoner Tatyana McFadden goes for a Grand Slam -- and takes on a whole new sport. The Baltimore Sun (10/24) by Kit Waskom Pollard
On Oct. 13, just before 9:15 a.m., Tatyana McFadden soared across the finish line at the Bank of America Chicago Marathon, just two seconds before the racer behind her, taking the top spot in the women's wheelchair competition and making history.
McFadden, 24, an Atholton High School graduate who grew up in Clarksville, completed the marathon in 1 hour, 42 minutes and 35 seconds, about a three-minute improvement over her first-place times in the Boston and London marathons earlier this year. With wins in all three, she became the first athlete to win three major marathons in one year.
"It was such a very tight, close finish," she says. "We were within seconds of each other. When I hit the last climb, my arms were hurting badly. It was exhausting. But I just let my arms do the work. I had to be confident in myself."
On Nov. 3, she hopes that confidence will help her add the ING New York City Marathon to that list of wins and, in doing so, become the first athlete to win the "Grand Slam" of marathons in one year.
But that's still not enough of a challenge for the University of Illinois undergraduate, who also won six International Paralympic Committee Athletics World Championship gold medals in 2013. She has a list of goals for the next year or two, including graduating in December, competing in more world competitions and taking up a whole new sport for the Winter Paralympic Games in February.
McFadden's life was not always strewn with medals and congratulations from the likes of Prince Harry of England. She was born in St. Petersburg, Russia, in 1988 with spina bifida, a birth defect characterized by the incomplete development of the spinal cord or its coverings. In 1994, Debbie McFadden, a commissioner of disabilities for the U.S. Department of Health and Human Services, visited Tatyana's orphanage and decided to adopt her.
"She was very anemic, very sick," Debbie McFadden says. "When I brought her to [Johns] Hopkins [Hospital], they said she would not have a long life. I thought, 'How can I keep her alive?' "
Debbie enrolled Tatyana in swimming lessons, and sports became the answer.
Tatyana became involved with the Bennett Blazers, a Baltimore-based adaptive athletic program for young people with disabilities. Working with experts at the Kennedy Krieger Institute and elsewhere, McFadden eventually gained use of her legs and learned to walk with crutches. Eventually, she opted for a wheelchair, which lets her move around more quickly.
Her skills and dedication to sports continued to grow. In 2008, McFadden began school at the University of Illinois at Urbana-Champaign and started training with coach Adam Bleakney, also a Paralympic athlete. When she's in Illinois, McFadden trains for about three hours a day.
"She's every coach's dream as an athlete," Bleakney says. "The dedication and commitment to the sport and goals and, to me, it's unquestionable — when you take that dedication and marry that to the natural gifts she has an athlete, that's a great combination."
That mix is usually on display in McFadden's races: one of her sculpted arms raised in victory, a determined smile on her lips as she crosses the finish line.
"She has a God-given talent, but nobody can give you the will, strength of personality and character she has," says Kathy Finney, a pediatric nurse practitioner at Kennedy Krieger. "She's soft-spoken but just delightful. She could have quite the ego doing the things she's done. But she's just so down to earth and sweet."
Finney credits Debbie McFadden for much of Tatyana's success. "Debbie has so much energy and a gift of love for people with disabilities," Finney says. In addition to Tatyana, Debbie has two other adopted daughters: 17-year-old Hannah and 14-year old Ruthi.
Debbie McFadden concedes that watching her child compete in such an intense, physical sport can be scary, but her pride and faith in Tatyana trump her fear.
For Tatyana, fear is not part of the equation. "I love the competitive drive and the fun," she says. "Everyone's there to support you. You have your teammates, family and friends. I love what I do."
The next few years will be busy ones for McFadden. On track to graduate in December, she is already thinking ahead to the World Championships in 2015 and Paralympics in 2016. "Hopefully, I'll keep training for marathons and the Olympics in Rio [de Janeiro] after that. I know it'll take a lot of hard work," she says.
But first, she has her sights set on the 2014 Paralympics in Sochi, Russia.
Wheelchair racing isn't a part of the Winter Games, so McFadden is branching out, learning how to ski. After the New York City Marathon, she will turn her attention to training for the Nordic ski event, a type of cross-country skiing.
In the Paralympics, individuals with different levels of disabilities can participate in the event. Tatyana started learning the sport with a borrowed, oversized ski sled that she pushed through snow with her arms.
To succeed in her new sport, her mother says, Tatyana will need technique, cardiovascular endurance and brute strength — which she has to spare. "She is the strongest wheelchair racer in the world," Debbie says, "but I don't really think I understood until I saw her in the snow, pushing. She has a power that is unreachable."
And her intense marathon training will translate into the new sport, which requires similar physical skills and determination.
If she qualifies for Sochi, Tatyana will join a short and elite list of athletes who have competed in the Paralympics in multiple sports. And she'll still be having a good time. "It's great crossover training," she says. "It's going to be fun training in the snow and getting better."
But before any of that comes the New York race.
"It's a very different race — lots of climbing and downhills," says McFadden. "I'm nervous and excited. It will be tough for all of us."
Watch McFadden's next race
To watch Tatyana McFadden at the New York City Marathon, tune in to ESPN2 from 9 a.m. to 12:30 p.m. on Sunday, Nov. 3.
Tatyana McFadden's Advice
A dedicated and determined athlete, Tatyana McFadden's mental approach is a big part of her success. Here, she offers some advice:
Be confident: Though McFadden was exhausted as she approached the end of the Chicago Marathon, she continued to push and had faith that her body would carry her across the finish line. "My arms had the muscle memory of the training," she says. "I just went as hard as I could."
Take care: For any athlete, training is demanding and requires a high level of awareness of physical health. She warns that it's necessary to pay attention to your body and, sometimes, stop training or racing. "I think the hardest part is training or if you injure yourself," McFadden says. "You have to take time off, and you worry about things that could really affect your performance."
Get back up: "We all have failures in our lives," says McFadden. "It's just how you get up and what you learn to make yourself better." When she loses a race, she learns and adjusts. "You can't just stop because you didn't win. You have to keep going."
Copyright © 2013, The Baltimore Sun
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CULTURE/MEDIA
Kelle Hampton uses blog to change perceptions of people with Down Syndrome. The Washington Post (10/23) (Mari~Jane Williams)
October is Down Syndrome Awareness Month, and there is much to celebrate this year. Wet Seal has a clothing model with Down Syndrome. A television commercial featured a child with Down Syndrome. And, locally, a Prince William County high school recently chose a 20-year-old junior who has Down Syndrome for its homecoming court.
All of these things are small steps toward breaking down stereotypes about people with Down Syndrome, said Kelle Hampton, mom of three and author of “Bloom: Finding Beauty in the Unexpected.” Hampton’s middle child Nella, 3, has Down Syndrome. Hampton has made it her mission to try to erase the stigma that still accompanies Down Syndrome for some people.
“I don’t want people to look at my child and think she’s stupid or feel sorry for her,” Hampton said, noting that it wasn’t that long ago that children with Down Syndrome were relegated to institutional settings. Now, therapies and more inclusive education practices are giving people with Down Syndrome the chance to lead more fulfilling lives.
Even with the progress, though, advocating for a child with Down Syndrome or other special needs can be thankless and exhausting work. Warrior moms are tired, but it’s not because their children are a burden.
They’re constantly fighting public perceptions and social stigmas. They log countless hours battling insurance companies about coverage for therapies. They often have to lobby for services from the local school system, and then keep a close eye to make sure their children’s Individual Education Plans are implemented and working. And, like Hampton, they’re worrying, even when their children are toddlers, about what awaits them in adulthood.
Yet for all the fatigue, for the most part, their lives are the same as any other mother’s, because, you know, these are their kids. Fighting for them is part of the job description. Hampton tries to reflect the normalcy of her life by deliberately not mentioning Down Syndrome much on her blog Enjoying the Small Things.
“My advocacy is about reading between the lines,” said Hampton, who lives in Naples, Fla. “I don’t talk about it a lot, because I want people to realize that we’re just a normal family, so when they see families with a child with Down Syndrome they don’t feel sorry for them.”
Hampton would rather people talk about all of the things Nella can do. Nella loves music and dancing — particularly to Hannah Montana and Taylor Swift — and playing on the iPad. She is busy learning her letters and she loves to talk. Just like most 3-year-olds.
Hampton acknowledges there is a wide range of difficulties affecting children with Down Syndrome, and many other families struggle with medical problems or cognitive issues that Nella doesn’t have. Regardless of those challenges, though, she wants everyone to see Nella and other people with Down Syndrome as people, instead of always viewing them through the lens of their disabilities.
“I want to build a world for my daughter so that when she’s 18, she’s happy,” Hampton said.
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Living with MS. Al Jazeera (10/23) (Stephanie Scawen)
After I had calmed down from being told that I had an incurable neurological disease that would probably one day confine me to a wheelchair, I felt strangely liberated. There was no point worrying over something that I had absolutely no control over; my fate being pre-determined by my immune system.
The only treatment for multiple sclerosis (MS) 15 years ago, shortly after I was diagnosed – and for many people today – were regular injections with unpleasant side effects and an efficacy of only about 30 percent.
And these drugs only slow down the progression of the disease. They cannot halt it. It remains incurable.
Medical science is, however, slowly catching up. But more on that later.
For those of you who know nothing about MS, it is the most common neurological disease in the world among 'young adults'. It is an auto-immune disease, which means that the body is attacking itself.
For reasons scientists still don't understand, the immune cells start destroying the protective sheath called myelin that covers all our nerves in our brain and spinal cord – a bit like the rubber coating around electrical wires. When the myelin is destroyed nerve messages can't get through to other parts of the body correctly – or sometimes at all.
At first the body can repair the damage, and the effects are temporary. But after some years the body's repairs department can't patch up the damage so well. The nerve damage after an 'MS attack' becomes more permanent – and a slow creeping paralysis sets in.
Scary huh?
Like the human body itself, MS is an immensely complicated disease. Its trajectory is different for every sufferer. And the symptoms depend on which part of the brain or spinal cord is under attack.
I've had MS for 17 years now. In that time I've suffered from double vision, numbness in my fingertips, eyebrows and left thumb. I've had half a face that itched like crazy for about ten days, even my eyelids. I was in Tonga on assignment when that happened. I knew it was an MS attack because I could have drawn a line down the centre of my face. To the left: itchy. To the right: normal.
Other people suffer from crippling headaches, weakness and fatigue so bad that they can't even get out of bed, and unspecified body aches and pains. But all of that seems rather alien to me, as I've never suffered those.
So I have to walk with a stick now, as my left leg is partially paralysed. It looks awkward. People always assume I must be in pain. But my biggest pain is people constantly asking me if I'm in pain.
I've only become disabled in the last two years. Before that I was running, diving and generally crashing around all over Asia. Me? MS? Disability? Pah, don't know what you're talking about.
And then you have 'the one': the MS attack that does change things. The one your body doesn't recover from; the one that disables you, after 15 years of being perfectly all right; the one that pulls the rug entirely from under your feet and your life.
And those feelings of being liberated by having an incurable disease that you can't control seem rather pointless, now you're faced with the cold hard fact that this is how life is from now on. And it ain't gonna get better.
So finding a cure becomes more important. And this is why I wanted to make the Al Jazeera Correspondent documentary MS & Me - The Search for a Cure.
Where are we in terms of finding better treatments than the current range of injectable medicines? Is a cure possible? How long have scientists been looking for a cure for the common cold? If they can't fix that, what chance is there for a disease like MS?
Anna Williams, a scientist at Edinburgh University’s Centre for Regenerative Medicine, does not like to use the word 'cure'. But she can see a time not too far in the future when MS can be brought under control. New drug treatments won't necessarily stop the disease happening, but they will negate any neurological damage.
Will those treatments come in time to repair the damage my body already suffers from? I can only hope, but keep a healthy dollop of cynicism at hand.
I am always reading about the latest scientific breakthroughs. And, while it's great to learn about them, many of the breakthroughs never amount to anything. There are always big steps from 'breakthrough' to effective 'treatment'.
Robin Franklin at Cambridge University found a way of repairing spinal cord damage in dogs, so that Jasper the paralysed Daschund could walk again. But that does not mean that the treatment can be translated into humans or as an effective treatment for MS.
He and his team may have also found the 'Holy Grail' for an MS cure. The magic molecule that means nerve damage caused by MS can be effectively repaired, and lost function returned. The RXR molecule is the key to making stem cells turn into oligodendrocytes – and they are the cells that make myelin.
But finding RXR and turning it into an effective treatment is still a long way off. I'd love to do without my stick. All I can do is hope that one day I can throw it away.
Al Jazeera Correspondent can be seen each week at the following times GMT: Thursday: 2000; Friday: 1200; Saturday: 0100; Sunday: 0600; Monday: 2000; Tuesday: 1130; Wednesday: 0100; Thursday: 0600.
Living with MS - Al Jazeera Correspondent - Al Jazeera English http://www.aljazeera.com/programmes/aljazeeracorrespondent/2013/10/living-with-ms-20131017102149749162.html#.Umm_qBUmnj0.twitter
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TECHNOLOGY
Improved cochlear implant promises deaf people crisper quality of sound. PBS NewsHour (10/23)
Miles O'Brien reports for Science Nation* on new technological advances which researchers hope will help deaf people hear better.
Cochlear implants help deaf people perceive sound; they convert sound waves into electrical signals that are sent directly to the brain. But for those with the implants -- approximately 188,000 people worldwide -- the sound can be muffled, dampened and far from perfect.
Engineer Pamela Bhatti and other researchers at Georgia Institute of Technology are creating a better cochlear implant that can improve the sound quality for those who can't hear without them. Their implant's thin-film electrode array is up to three times more sensitive than traditional wire electrodes, without adding bulk. They hope their design will improve the signal between the array and the nervous system, which as a result, will lead to better quality of sound for users.
*Editorial note: Science Nation is a publication of the National Science Foundation (NSF). The NSF is an underwriter of PBS NewsHour.
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American Association of People with Disabilities
2013 H Street NW, 5th Floor
2013 H Street NW, 5th Floor
Washington, DC 20006 United States
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