Cynde Soto (pictured) dreads the arrival of yet another benefit notice.
Her cash assistance has been cut four times in two years. State medical coverage is getting more expensive and no longer includes dental care or podiatry. And the in-home help she needs to take care of basics has been cut by about 20 minutes a day.
"That doesn't sound like a lot to people but … I'm a quadriplegic," said the 54-year-old Long Beach resident. "I can't even scratch my own nose."
Faced with years of recession-driven budget shortfalls, state lawmakers have made deep cuts to health and social services. The reductions, including a round that took effect this month, translate into sizable state savings but are sharply scaling back the safety net for California's most vulnerable residents: the elderly, the disabled and the poor.
Since mid-2008, more than $3 billion has been sliced from CalWorks, the state's welfare program for nearly 600,000 families with children, according to an analysis by the California Budget Project, a nonpartisan think tank. Another $3 billion has been cut from Medi-Cal, which provides health coverage to about 7.5 million Californians. And $4.6 billion has been cut from the Supplemental Security Income program, which supports nearly 1.3 million elderly and disabled people with little or no other income.
The cuts are reversing longstanding policy priorities and eroding the ability of public agencies to cope with a growing and aging population, advocates for low-income families say.
More than a billion dollars has been slashed for childcare, job training and other services that have helped hundreds of thousands of unemployed Californians reenter the workforce since a Clinton-era overhaul of the national welfare system imposed strict limits on benefits in 1996.
"We've gone back on the social compact of welfare reform," said Jean Ross, the California Budget Project's executive director.
Because those programs are stretched, welfare recipients with small children have not been required to participate in workforce preparation activities since 2009, increasing the number of exempt families by about 60,000, according to the County Welfare Directors Assn. of California.
"We have a lot of people we're telling to sit at home," said Michael Herald, a lobbyist for the Western Center on Law & Poverty. "We have fundamentally distorted the program in recent years because of the budget crisis."
Programs that help the poor, the elderly and the disabled stay healthy and independent have also been hit, undercutting local, state and federal efforts to keep the needy away from high-cost emergency rooms and institutionalized care.
"You've got the most vulnerable people in society getting hit with multiple cuts," said Frank Mecca, who heads the welfare directors association. "The same person gets hit over and over."
Soto is paralyzed from the shoulders down but does not let that keep her from doing advocacy work for people with disabilities at a Los Angeles independent living center. Using her mouth, she can operate a computer trackball and type numbers into a phone with a Popsicle stick. Several times a week, an aide helps her into an electric wheelchair so she can take the train to work.
Most of the $800 she earns a month goes toward work expenses, including paying someone to feed her lunch. She has relied on $723 a month in SSI to cover rent and utilities. In July, the state reduced its portion of the grant for single beneficiaries like Soto to the federal minimum, shaving $15 from her income.
The same month, the state began charging Medi-Cal beneficiaries copayments of $5 for prescriptions, $50 for emergency room visits and up to $200 for hospital stays. Soto has five prescriptions and went to the hospital four times last year. "That can really add up," she said.
But the cuts that worry her most are those to the In-Home Supportive Services program, which is paying for about nine hours of care a day. The two women who have been assisting Soto for more than a decade have told her they will have to look for other jobs if their hours are cut again. Without them, she fears she would have to go into a nursing home.
"Oh, my gosh. That's no way to live," she said. "I wouldn't be able to continue working. I would lose my quality of life.... I think I would rather just die."
State lawmakers said tough choices had to be made because of the size of the budget shortfalls, which totaled tens of billions of dollars. Health and human services account for about a quarter of state spending.
Last month, Gov. Jerry Brown signed another "painful budget" with deep cuts to services after losing a bid to win enough Republican votes to extend temporary taxes. Republicans said the taxes were a drag on the struggling state economy.
Among the cuts taking effect this month is an 8% reduction to CalWorks grants for low-income families. A single mother with two children living in Los Angeles County now receives a maximum $638 a month. If the mother has been on the program for more than four years, her portion of the grant will expire Aug. 1, and the family will be left with $516 a month. Previously, adults could receive cash aid for five years.
A Times analysis shows that the maximum monthly payment for a family of three has fallen to just 41% of the federal poverty level, compared to 55% before welfare reform began in 1996.
Margarita Romo, a 61-year-old widow from Pasadena with two children at home, says she is careful about money and reluctant to complain about benefits.
"That's not me," she said. "I find I always have enough for food, for rent." But the thought of managing with the latest cuts, she said, makes her "sick."
Romo's household income is being hit on two fronts: the reductions in CalWorks and SSI payments, which they receive to help care for a child with Down syndrome. Her older children say they want to help. But one has a child of her own; another has been looking for work for months; and the third had to drop out of college to pay a $2,000 emergency room bill because he had no insurance.
"We worry about her, all of us," said eldest daughter Marisol Salcedo, 23, who is studying engineering. "We give her money, but later on it's one of us borrowing $20."
Federal programs, including food stamps and job subsidies, helped ease the impact of some state cuts, said Caroline Danielson, a fellow at the Public Policy Institute of California. But the subsidies were temporary and food stamps can't be used for rent or utilities.
In addition to affecting beneficiaries, the state cuts are eroding the ability of counties to provide quality services, Mecca said. Even before the current recession, state funding to administer services was not keeping pace with inflation. Many counties have had to reduce staff even though caseloads are growing.
Mecca's association estimates the cuts have left the state short about 1,280 child welfare workers and 465 adult protective services workers, who investigate elder abuse and neglect.
"We know that we're not responding to all the calls that we should be," Mecca said. "You just can't."
The Los Angeles County Department of Public Social Services has lost about 1,500 employees since 2007, said Director Philip L. Browning.
"I don't see us ever getting back to the level of staff that we have had," Browning said. "I think we're going to have to do things smarter." Among adjustments the county has made is taking benefit applications online.
The Medi-Cal cuts and the elimination of state funding for community clinics have reduced access to healthcare, , said Anthony Wright, executive director of Health Access California, a consumer advocacy group. And he said the problem could get worse if the state wins a legal fight to cut reimbursement rates for Medi-Cal service providers.
The combined cuts have left many families hard-pressed to manage day-to-day needs.
Carlos Garbutt, a 45-year-old database manager from Riverside, gets up before dawn to make breakfast for his 74-year-old mother, Nubia. He wakes her by gently stroking her cheek, then bathes and dresses her and carefully styles her curly dark hair. She has Alzheimer's and Parkinson's disease. Garbutt has been able to continue working because the state has paid for her to attend a day care program at Loma Linda University Medical Center and receive 126 hours a month of in-home care. But, the latest state budget could upset this arrangement.
The state's Adult Day Health Care program are being eliminated, and it is not clear what alternatives will be provided. That leaves Garbutt wondering whether he can continue to care for his mother at home.
"I want to be part of her journey," he said. Although his mother no longer speaks, he said, "I'm able to see when there is a glimmer of a smile or when she enjoys her meal... Those are gifts that will live on."
Sunday, July 31, 2011
In California, state lawmakers have made deep cuts to health, social services; safety net gone for many disabled or elderly people
Los Angeles Times:
Posted by BA Haller at 8:54 PM
The AP. In the picture, a bust of Helen Keller scorched and covered in World Trade Center dust on display in New York.
NEW YORK — Letters written by Helen Keller. Forty-thousand photographic negatives of John F. Kennedy taken by the president's personal cameraman. Sculptures by Alexander Calder and Auguste Rodin. The 1921 agreement that created the agency that built the World Trade Center.
Besides ending nearly 3,000 lives, destroying planes and reducing buildings to tons of rubble and ash, the Sept. 11, 2001, attacks destroyed tens of thousands of records, irreplaceable historical documents and art.
In some cases, the inventories were destroyed along with the records. And the loss of human life at the time overshadowed the search for lost paper. A decade later, agencies and archivists say they're still not completely sure what they lost or found, leaving them without much of a guide to piece together missing history.
"You can't get the picture back, because critical pieces are missing," said Kathleen D. Roe, operations director at the New York State Archives and co-chairwoman of the World Trade Center Documentation Project. "And so you can't know what the whole picture looks like."
The picture starts in the seven-building trade center complex. Hijackers flew jetliners into the twin towers on Sept. 11, 2001, which collapsed onto the rest of the complex, which included three smaller office buildings, a Marriott hotel and U.S. Customs. 7 World Trade Center, a skyscraper just north of the twin towers, collapsed that afternoon.
The trade center was home to more than 430 companies, including law firms, manufacturers and financial institutions. Twenty-one libraries were destroyed, including that of The Journal of Commerce. Dozens of federal, state and local government agencies were at the site, including the Equal Employment Opportunity Commission and the Securities and Exchange Commission.
The Central Intelligence Agency had a clandestine office on the 25th floor of 7 World Trade Center, which also housed the city's emergency command center and an outpost of the U.S. Secret Service.
The first tangible losses beyond death were obvious, and massive.
The Cantor Fitzgerald brokerage, where more than 650 employees were killed, owned a trove of drawings and sculptures that included a cast of Rodin's "The Thinker" — which resurfaced briefly after the attacks before mysteriously disappearing again. Fragments of other sculptures also were recovered.
The Ferdinand Gallozzi Library of U.S. Customs Service in 6 World Trade Center held a collection of documents related to U.S. trade dating back to at least the 1840s. And in the same building were nearly 900,000 objects excavated from the Five Points neighborhood of lower Manhattan, a famous working-class slum of the 19th century.
The Kennedy negatives, by photographer Jacques Lowe, had been stowed away in a fireproof vault at 5 World Trade Center, a nine-story building in the complex. Helen Keller International, whose offices burned up when its building, a block from the trade center, was struck by debris, lost a modest archive. Only two books and a bust of Keller survived.
Classified and confidential documents also disappeared at the Pentagon, where American Airlines Flight 77 slammed into it on 9/11.
A private disaster response company, BMS CAT, was hired to help recover materials in the library, where the jet plane's nose came to rest. The company claimed it saved all but 100 volumes. But the recovery limited access to information related to the Soviet invasion of Afghanistan in the 1980s, as the U.S. prepared to launch an attack a month later.
In New York, CIA and Secret Service personnel sifted through debris carted from the trade center to a Staten Island landfill for lost documents, hard drives with classified information and intelligence reports. The CIA declined to comment.
Two weeks after the attacks, archivists and librarians gathered at New York University to discuss how to document what was lost, forming the World Trade Center Documentation Task Force. But they received only a handful of responses to survey questions about damaged or destroyed records.
"The current atmosphere of litigation, politics and overall distrust surrounding the 9/11 attacks has made information sharing and compilation a complex task," said the final 2005 report of the project.
Federal agencies are required by law to report the destruction of records to the U.S. National Archives and Records Administration — but none did. Federal archivists called the failure understandable, given the greater disaster.
After Sept. 11, "agencies did not do precisely what was required vis-à-vis records loss," said David S. Ferriero, the Archivist of the United States, in an email to The Associated Press. "Appropriately, agencies were more concerned with loss of life and rebuilding operations — not managing or preserving records."
He said off-site storage and redundant electronic systems backed up some records; but the attacks spurred the archives agency to emphasize the need for disaster planning to federal records managers.
Said Steven Aftergood, the director of the project on government secrecy at the watchdog group the Federation of American Scientists: "Under extreme circumstances, like those of 9/11, ordinary record keeping procedures will fail. Routine archival practices were never intended to deal with the destruction of entire offices or buildings."
Only the U.S. Attorney's Office of the Southern District formally requested help from federal archivists after discovering stored case files kept had been damaged by mold and water.
The EEOC had to reconstruct 1,500 discrimination case files, said Elizabeth Grossman, supervisory trial attorney for the agency in 2001 at the time of the attacks. Cases were delayed for months. Computers had been backed up only as of Aug. 31, 2001. Witness interviews had to be conducted all over again.
The Port Authority of New York and New Jersey, which owns the region's airports, bridges and the World Trade Center, had much of its archives and the contents of its library — which had closed in 1995 as a cost-cutting measure — in the building.
But a decade later, it only has "a general idea" of what documents were destroyed, Port Authority spokesman Steve Coleman said, including most of its video and photo archives, board meeting minutes and the compact that created the bi-state agency. It was kept on the 67th floor of the north tower.
"We do not have a detailed list" of the missing records, Coleman said in an email. The agency meticulously stores thousands of tons of steel from the building and other wreckage of the trade center in a hangar at Kennedy Airport.
A meeting had been scheduled — on Sept. 11, 2001 — between the agency and a group of libraries that had wanted to claim parts of the Port Authority collection, stored in the north tower. The meeting had been postponed at the last minute, said Ronald Becker, the head of special collections at Rutgers University Libraries, who was supposed to attend.
Not everything was lost. Copies of inventories had been sent out to the libraries that had sought to take parts of the collection, and as workers sifted through the rubble at ground zero, they found remnants of a photographic collection kept by the agency. Tens of thousands images dating back to 1921 were restored from what had been a collection of one million before the attacks.
One photo contact sheet — a picture of the Port Authority's aviation director — was discovered by a recovery worker two days after the attacks. It was given to the Sept. 11 museum, along with office IDs, letters and other bits of paper that were recovered in the rubble in the days and weeks afterward.
Jan Ramirez, the curator of the National September 11 Memorial & Museum, said there was no historical consciousness surrounding the site before it was destroyed.
"It was modern, it was dynamic. It was not in peril. It was not something that needed to be preserved," she said.
"Now we know better."
Posted by BA Haller at 8:34 PM
When terrifying battlefield memories come rushing back, war veterans have for years had to rely on therapy and other low tech methods to cope in the civilian world.
But now veterans have a new weapon in the fight against post traumatic stress disorder (PTSD) - mobile phone apps.
'I'm not going to lie - when this came out, we sort of wanted to slam it,' a once sceptical Staff Sargent Meg Krause said of her group of veteran friends.
'But it surprised us and has been a phenomenal tool,' said the 29-year-old reservist and medic, who has had counselling for post-traumatic stress disorder.
A half-dozen apps with names like 'T2 MoodTracker,' 'PTSD Coach' and 'Breathe2Relax' have been developed by the Pentagon and Veterans Affairs Department, but not to diagnose illness or replace psychiatric counselling.
Rather, the apps offer at-your-fingertips information about what the military calls 'invisible wounds' of the wars in Iraq and Afghanistan - and techniques for managing the symptoms.
All but one were the work of the Pentagon, starting with MoodTracker, which lets users rate how they're feeling - worthless, happy, lonely and so on - and keep a record of their ups and downs over time.
The newest, released in May, was a joint Pentagon-VA effort - PTSD Coach.
It helps self-assess symptoms, gives step-by-step instructions in muscle relaxation and breathing, helps users create a phone list of people to call when they need support and helps vets contact the National Suicide Prevention Hotline in an emergency.
'Someone who's struggling ... all they have to do is pull out their smartphone or their iPhone and say, 'I can help myself,' Krause said.
'To know that there is something that I can pull out and watch, and it will help me go through my breathing techniques so I don't get to that crisis moment, I think is immensely important.'
There's also an app for health care providers that includes definitions, causes and severity ratings for mild traumatic brain injury - or concussions - suffered by so many troops from roadside bombs and other explosions.
Another for doctors treating PTSD is expected in the coming months.
Officials hope the apps for troops, vets and their families will encourage more people to get professional help and will be used by others to supplement professional therapy.
Krause served twice in Iraq and has worked for the "Real Warriors" campaign, a separate defence program in which service members tell their personal stories to encourage other troops to go for counselling.
Finding others to talk about using the apps is hard since the free downloads are anonymous.
Preserving that privacy is a big selling point for a military population that hides its problems for fear of appearing weak or being passed over for promotions.
'Engaging veterans on their own terms is especially crucial in the area of mental health,' said Dr. Sonja Batten, a clinical psychologist who works on national mental health policy for the VA.
For now, what's known is that MoodTracker was downloaded about 17,000 times since it was introduced.
Since PTSD Coach was released in May, it has been downloaded about 11,000 times in 37 countries, including Mexico, Latvia and Japan.
Although the app is particularly tailored to the needs of active-duty troops and veterans, some users may also be PTSD sufferers with no military background.
Officials believe it's likely some are civilians who've had other types of trauma, such as from physical or sexual assaults, car accidents or natural disasters.
Posted by BA Haller at 8:19 PM
Saturday, July 30, 2011
ATLANTA -- From reveille to marches to taps, music plays a vital role in the life of a soldier. One disabled Iraq veteran says he believes it may play an even more important role for wounded warriors.
Paul Delacerda spent 15 years jumping out of airplanes with the Army's vaunted 82nd Airborne Division before he blew out his kornee, ending his paratrooper career. But he wasn't done serving. He fought his way through grueling rehab and back into the Army on his third attempt.
No longer able to jump, Delacerda was serving on the ground in Iraq when his life changed suddenly and forever.
"A lot of bad stuff happened that day," he said.
Delacerda, a staff sergeant, was driving a truck on a route-clearing mission -- searching for roadside bombs -- in the dangerous Tal Afar area in 2005.
"The pucker factor in that is greater than you can imagine," he quipped.
As Delacerda and his squad crept down the road, chaos broke out all around them. A youth of about 12 threw a grenade, and the soldiers shot back, he said.
"Suddenly everything went black," Delacerda recalled. An improvised explosive device had exploded under the truck.
The blast didn't tear Delacerda's body apart, but it violently knocked his brain around inside his skull. Everyone in the squad survived, but Delacerda's military career really was over this time.
Now he suffers severe headaches, numbness in his arms and legs, nightmares, post-traumatic stress disorder and profound memory loss. Sometimes he doesn't recognize close friends. On one occasion he found himself inside a Walmart, unable to remember his own name, let alone why he was there, he said.
But one thing he has no trouble remembering is songs: "I hear it once, I can play it on drums," he said.
Out of the Army, on disability and unable to work, Delacerda found that music was one of the few things that could hold his focus, and that he felt better when he played -- once he relearned how to play. He knew he couldn't be the only one helped in this way.
Delacerda got the idea in 2009 to form a band of wounded warriors who would play for audiences of wounded warriors. By early 2010 the band Warrior Spirit was up and jamming at Veterans Affairs hospitals, rehab facilities and Warrior Transition Units.
"We can talk to these wounded soldiers and talk to them about what they're going through," Delacerda said. "We can say, 'Hey man, I've been there.' ...
"We're helping these guys heal while we heal ourselves."
Warrior Spirit has seen some personnel changes, but the current version is made up of Delacerda on drums, Levon Ingram on rhythm guitar and vocals, Robert Ferguson on vocals, King Burton on bass and Brian Hunter on saxophone. The band is searching for a lead guitarist.
Burton was wounded with the Army in Vietnam. Hunter served in the Navy during Operation Iraqi Freedom.
"I don't know that it's helped as far as the problems that I have," said Ingram, 29, who suffered a head injury with the Army in Qatar in 2003 and continues to struggle with PTSD. "But it's relaxing. It's a kind of therapy.
"It helps a lot to be around other combat veterans," he added. "It's not like talking to regular people. You automatically have a bond."
Ferguson said bluntly: "We show our fellow veterans and soldiers that are just coming back and are all jacked up that it's not the end of the world."
Most of the band members' injuries are not apparent to the casual observer. You can't say that of Ferguson, 32.
Ferguson makes a point of wearing shorts for gigs and photo shoots so everyone can see his metal right leg.
"I do show it off, because with the rest of the guys in the band, their injuries are internal, but the leg brings validity to the mission," he said. "With me out there, it says, 'Well, maybe these guys are for real.' "
Ferguson lost his leg in an accident at Fort Hood, Texas, while training for the Army Reserve after a hitch in the Air Force. But he almost never has to explain that to other warriors, he said.
"Nobody asks what branch (you belonged to) or how you got hurt," he said. "All anyone cares about is 'You're one of us.' "
And there's no shame in Ferguson's game.
"My wife says I'm cocky; I just say I'm overconfident," he joked.
"Kids' reactions are hilarious," he added. " 'Mom, did you see that guy with the robot leg? I wonder if he has special powers!'"
In a way, he does. The whole band does.
"It's an inspiration," said Tina Raziano, a case manager at the Shepherd Center, a private rehabilitation facility in Atlanta that treats many service members who've suffered spinal or brain injuries as well as emotional trauma.
"A lot of these guys can't see the light at the end of the tunnel. These guys are coping with a lot of things," Raziano said. "If they can see other wounded warriors doing better, playing in front of them, doing well, it helps them see the light at the end of the tunnel."
It's good for the musicians themselves, too, she noted. Learning and playing a musical instrument helps the injured brain rebuild neural pathways and can improve cognitive abilities, she said.
The Shepherd Center's music therapy program received a huge boost last winter when a story about it by CNN affiliate WXIA-TV in Atlanta mentioned the center had just two guitars for wounded soldiers to play. Viewers responded by donating more than 20 guitars within a few days, and the National Pawnbrokers Association came through with over 100 more.
"We don't need any more guitars!" Raziano said. But the instruments have been a boon for the wounded warriors she sees.
"It diverts them from whatever psychological thing they're dealing with," she said. "They don't have to deal with all those horrible thoughts they're carrying with them from the war."
"You remember a lot of things you don't want to," Delacerda affirmed. "So having these guys (band mates) here is pretty cool. We all have issues we have to deal with."
Warrior Spirit plays its blend of country rock, blues and progressive music -- including songs written by Ingram and Ferguson -- throughout the Houston area but would like to take their show on the road. The band is seeking sponsors to help finance a reliable touring vehicle and meet other expenses.
On the schedule are concerts August 6 at the Vets & Hawks Bike Rally in Cleveland, Texas, and September 4 at the Freeport (Texas) Blues Festival. "We use our music as a healing tool," Delacerda said. "Never give up and never quit.
"The lineup may change, but the name and the mission will stay the same. We're warriors playing for warriors, and we always will be."
Posted by BA Haller at 11:16 PM
Friday, July 29, 2011
Film about a deaf bisexual man in Cuba, "Habana Muda," earns director Special Jury Prize at NY City's NewFest
Review from Vox:
New York’s NewFest, in its 23rd year, came to a close July 28 with the announcement of its winners prior to their closing night screening of “Gun Hill Road.” Of over 50 films, winners included Maryam Keshavrz’s “Circumstance” (Best Film - Narrative Feature), John and Gretchen Morning’s “Gone” (Best Film - Documentary), Eric Brach’s “Habana Muda” (pictured) (Special Jury Prize - Documentary), Michael Stabile’s “Smut Capital of America” (Best Doc Short), Kyle Henry’s “Fourplay: San Francisco” (Best Narrative Short), and “Tomboy” star Zoé Héran (Best Performance).
Review from Vox:
This is not your typical director-grills-the-subject kind of documentary, and don’t expect to have the characters all figured out after watching Eric Brach’s Habana Muda. Brach, a self-proclaimed true documentary filmmaker, chose to leave the story of a contorted love triangle ambiguous to even the most insightful.
The film follows Chino, a deaf mute jack-of-all-trades, trying to support a mute wife and two children in Cuba. But, this film is neither a rags to riches story nor a nasty soap opera affair. In addition to being a supportive husband and father, Chino is in an open relationship with a man from Mexico. Chino suddenly finds himself dreaming about a new life, a new job and a new love. Believe it or not, Anaylis, his wife, is all for it. “He’s a free man. What can I do?” she signs. However, as plans begin to fall through and lies start to mix with truths, Chino becomes trapped between two countries, two loves and the fine line between dreams and reality.
Habana Muda is a film unlike many others. Brach definitely takes advantage of his talented photographers. Every shot is a photograph in itself. There are no special effects or fancy cinematography, just beautiful, true images of this captivating story. Sound is as much of a presence in the film as the characters and images are. As you can imagine, with deaf mute characters, the film is mostly silent, filled with traffic, people yelling, the sounds of the ocean and music in the place of character voices. You can’t help but listen to the sounds of Cuba and realize Chino and Anaylis have never heard them and never will.
At the heart, this film covers love in all the confusing forms it can muster and depicts it with all the drama and comedy that comes with life. The audience becomes torn between two couples: Chino and Anaylis who look so in love, while they dance and laugh to music they can’t hear and Chino and Jose who support each other, but their motives are indistinguishable. Be prepared to test the typical stereotypes of love and family and to create your own idea of what these characters are really about.
Posted by BA Haller at 9:30 PM
Texas high school student starts blog to support other kids whose parents have degenerative brain diseases
El Paso Times:
High-school senior Michael De Sousa (pictured) has a lot on his mind -- basketball practice, volunteering, the Air Force Academy -- and most important, his mom's degenerative disease, leukoencephalopathy.
De Sousa's mother, Patricia De Sousa, was diagnosed with leukoencephalopathy, a degenerative brain disease, in 1997. Patients with this disorder tend to be diagnosed with multiple sclerosis first. As the disease progresses, patients display symptoms of multiple sclerosis and Alzheimer's. Other symptoms they display include being absent-minded, confusion, fits, and loss of balance and motor skills.
Michael and his sister, Melissa De Sousa, do what they can to keep their mother comfortable. But some days can be more challenging than others. For
those days, De Sousa turns to his blog, "Students with Disabled Parents," where he shares his experiences with others.
The idea behind the blog, he said, is to show other young teens who are going through the same thing that they are not alone.
"I want this to be a place where everyone going through the same thing can go to," Michael De Sousa said. "Sometimes people might feel embarrassed, but this is a place where they can talk about it and share what they are going through."
Since Michael's mother was diagnosed at 32, things have changed at home.
"She used to inject herself with the medicine," Michael De Sousa said. "But as she got worse, we started to do that, and now she's actually on several medications."
Other members of the family, including Michael's father, Paul De Sousa, were also affected by Patricia's illness.
"Suddenly I knew that my daughter would be turning to me for questions that I didn't know if I would be able to answer," Paul De Sousa said. "So I started checking out books and reading them so I could be prepared when that day came."
Before his mother was diagnosed with the disease, Michael described his mom as a beautiful woman who would always be with him at school and go with him and his sister to parties.
The first sign that something was not right with his mom came in 1997 when Michael noticed that she wasn't walking as quickly, and then her muscles became stiff.
Now his mother needs help with everyday tasks. The family -- Michael, his sister and their father -- help her bathe and brush her teeth, as well as with other basic necessities.
Some days are more difficult than others, but through it all, the family gets through it, said Paul De Sousa.
"We use our humor," he said.
"We are always joking in my house. Either we poke fun at each other, or we poke fun at ourselves. And Michael just continues to try to raise awareness about this degenerative disease."
Since his mother's diagnosis, Michael De Sousa has read up on the disease so he can be up-to-date on the current research. He began bottled water sales in the area to raise money to research multiple sclerosis in the hopes of a future cure or better treatments.
All the money raised goes toward research for a cure to the National Multiple Sclerosis Society chapters in El Paso and in Long Island.
Posted by BA Haller at 9:18 PM
Thursday, July 28, 2011
San Jose Mercury News columnist,
Friendship drove Brad Parks (pictured) to become founder of wheelchair tennis. In 1976, the 18-year-old sat in a hospital bed pondering what his life would look like -- after being paralyzed from the waist down by a spinal cord injury suffered in a ski accident. Parks didn't want to lose his athletic friends, and wondered what sport he could play, given his injury. He had played recreational tennis before the accident, and thought to himself, I could probably play tennis from a wheelchair, although he had never actually sat in one.
From that vision, Brad Parks went on to found the sport of wheelchair tennis, and for 20 years, served as president of the National Foundation of Wheelchair Tennis. For his pioneering role, Parks became the first wheelchair player to be inducted into the International Tennis Hall of Fame in 2010. Wheelchair tennis tournaments are now held in 41 countries worldwide, with programs existing in almost 100. San Clemente resident Brad Parks is also a real estate agent in Orange County.
Q: How and when did you get the idea for starting wheelchair tennis?
A: When I was in the hospital and realized I would most likely be in a wheelchair for life, I began to think about things I could do, and one was tennis. I thought just maybe a guy in a wheelchair could play tennis. At the time, I had one set of friends who were all skiers and surfers -- since that's what I did. My first thought was, what can I do so I don't lose all my friends?
So I started playing tennis just after I got out of the hospital. My parents were playing at a park, and asked me to give it a try, because they knew I was thinking about playing. I loved it from the first hit. I thought that I'd give myself a year and see if it could be done, and after that year, I never stopped playing.
Our first wheelchair tennis tournament was held in Griffith Park in 1977, and I played in the finals against David Kiley, who was a premiere wheelchair basketball player. At that time, basketball was the main wheelchair sport, and many of those players also became wheelchair tennis players. A few years later, after giving an exhibition and clinic in Southern California, a small group -- mainly me and a local teaching pro -- decided we should form an organization to develop the game, and so we did.
Q: What were the challenges in getting it going?
A: It was hard at first because the wheelchairs were so bad. There were no sport-type chairs in the 1970s, only hospital chairs. We also used two bounces, which was hard for people to grasp. Many court owners did not want wheelchairs on their courts, and it looked sort of weird to see a bunch of handicapped people try and play tennis. But over time, they realized that wheelchairs didn't harm the courts, and there was a whole new group of people who wanted to play their sport.
The invention of lightweight chairs and techniques used in pushing the chairs and positioning the body in the chair enabled more people to be able to play -- like quads. In my playing days in the '70s and '80s, a guy who was an amputee or had polio with really good balance had such an advantage over someone with a higher-level (spinal cord) injury. In those days, too, guys were trying to modify their wheelchairs to try and make them turn better. There were kids in their 20s in wheelchairs who started making wheelchairs in their garages and forming their own companies, and it revolutionized the wheelchair industry.
Q: Have you been surprised at how successful the program has become?
A: Yes and no. I always felt wheelchair tennis was a wonderful sport, and one where a disabled person could play with an able-bodied person -- making it even more special. But success at the top level, playing in the Grand Slams, prize money, and the development of (light-weight) wheel chairs has been fantastic. I did not imagine that we would be playing in the Grand Slams or be run by the organizations of tennis, and be part of the game versus being separate. I also know a lot of coaches who have told me that wheelchair tennis revived their interest not only in playing, but in coaching. It's been a good thing.
Q: What has being involved with wheelchair tennis done for your health and life?
A: I wanted to participate in sports with my able-bodied friends after my accident. Tennis gave me this opportunity. It made me feel alive and more normal. With the growth of the game and the competition, I was able to travel the world and make wonderful friendships because of tennis. It also kept me fit throughout my adult life.
Q: What is your philosophy on what disabled athletes can achieve?
A: I am constantly amazed at what wheelchair athletes have been achieving. I was injured in a skiing accident, and I thought my skiing days were over, but I went helicopter skiing this past March in Alaska. With the invention of sports equipment and the continued improvement in wheelchairs, disabled people can go hiking, biking, and water and snow skiing. There is even a guy who does back flips in skate parks in a wheelchair.
Posted by BA Haller at 9:56 PM
KPBS-TV in San Diego:
There are always lines at Comic-Con. Lines to get in, lines to see the "Twilight" panel, lines to play the newest video game. Lines are a part of life at this convention devoted to comics, movies and all things pop culture. But in recent years, even the lines at disabled services are long.
Joy Banks waits to register at disabled services with a companion, who she introduces. "This is Angel, my service dog." Angel is a little restless. Banks says she's bored and asks her family, "How long have we been waiting here, an hour and a half?"
Banks, 50, has been attending Comic-Con for nine years. She uses a wheelchair because she has hip problems and emphysema. She says Comic-Con really caters to people with special needs. "They have a rest area so when we’re tired we can come over here and rest, which helps a lot because it’s a very big venue, and it’s hard for all of us to get around."
Comic-Con doesn’t track the number of disabled who attend every year, but spend just one day walking the convention hall and you’ll see plenty of wheelchairs moving through the notoriously large crowds. Bill Cademy says that’s the hardest part. He presses a button on his wheelchair. "This little "beep beep" on the scooters, no one pays attention to it. It’s too quiet. This year I decided to try the bicycle bell and it seems to work. It worked last night anyway, like magic!"
Comic-Con set up disabled services in 1988. It rents wheelchairs and provides cold storage for medicine. If a disabled person needs a helper or attendant, that person can attend Comic-Con for free.
Doug Lathrop is in a wheelchair and has been going to Comic-Con for 15 years. He brings a friend he’s known since junior high to help him. Lathrop explains: "It’s good having someone, I get tired of having to push this thing around so he’ll push me around for awhile and there are other people who really need a helper and need an attendant for various things."
Lathrop saw his disability, a bone condition called Osteogenesis Imperfecta, portrayed in a superhero movie from 2000 called "Unbreakable," starring Samuel L. Jackson. He laughs, "Yeah, they got some of it right but most of it they got wrong. Particularly since, you know, I don’t know anybody with it that looks like Samuel L. Jackson."
Professor Xavier of the popular "X-Men" franchise is in a wheelchair. The superhero Daredevil is blind. Comic-Con spokesperson David Glanzer says the world of comics often celebrates difference. He says, "when you deal with comic books, fantasy and all that, somebody in a wheelchair isn’t all that different when you talk about people who have two heads or multiple limbs or is green in color or whatever."
Lathrop says his interest in comic books and science fiction started when he was young. "I had a very active fantasy life when I was a kid. I spent a lot of time in and out of hospitals and I couldn’t do a lot of active, physical stuff so I spent a lot of time at home and I read a lot."
Lathrop says he’s noticed more disabled people coming to Comic-Con. Fans will wait in line for hours to get into Comic-Con’s popular panel events like the one for Harry Potter, or HBO’s "True Blood." There’s a separate line for the disabled to wait in, and Lathrop says now those lines are really long. He explains, "Last year, I tried to get in the panel for 'Glee' and we got there and the line was so long there was no way. We didn’t even bother getting in line because we weren’t going to get in."
Comic-Con spokesperson Glanzer says, "I don’t know if we have a special appeal to the disabled but I think that those who come to Comic-Con, find an accepting environment. And that is true for all of those people who didn’t feel they fit in quite well in the real world, well for four days out of the year, at Comic-Con, you can not only fit in, but you know be the cool people."
I’ve often heard about a man who comes to Comic-Con every year and outfits his wheelchair with a large dragon head. This year I finally saw him, moving through the crowds, but because of that dragon head, he had to stop every few feet so someone could take his picture.
Posted by BA Haller at 7:40 PM
Los Angeles Times. In the picture, Mark Beckwith, who has muscular dystrophy, walks his dogs.
A genetic technique that allows the body to work around a crucial mutation that causes Duchenne muscular dystrophy increased the mass and function of muscles in a small group of patients with the devastating disease, paving the way for larger clinical trials of the drug.
The study in a handful of boys age 5 to 15 showed that patients receiving the highest level of the drug, called AVI-4658 or eteplirsen, had a significant increase in production of a missing protein and increases in muscle fibers. The study did not last long enough to show clinical improvement in the patients, but it demonstrated that the drug is safe in the short term and researchers are confident that longer-term trials, now in the planning stages, will show clinical benefit.
"I've worked with patients with Duchenne muscular dystrophy for many years and this is the first time we can say with confidence that we've made a significant breakthrough towards finding a targeted treatment," said Dr. Francesco Muntoni of the University College London Institute of Child Health, who led the study. Results were reported Sunday in the journal Lancet.
Duchenne muscular dystrophy affects about one in every 3,500 males worldwide. It is caused by any one of several different mutations that affect production of a protein called dystrophin, which is important for the production and maintenance of muscle fibers. Affected patients become unable to walk and must use a wheelchair by age 8 to 12. Deterioration continues through their teens and 20s, and the condition typically proves fatal as muscle failure impairs their ability to breathe.
Muntoni and his colleagues studied a variety of Duchenne muscular dystrophy in which affected boys are missing a fragment of the dystrophin gene called exon 51, a mutation that affects about 13% of such patients. The missing fragment converts exon 51 to a "stop" signal that halts the production of dystrophin, leading to a severely truncated protein that cannot carry out its normal function.
Two decades ago, pharmacologist Ryszard Kole of the University of North Carolina at Chapel Hill began exploring the use of a technique called antisense RNA to treat the condition. He used a specially prepared chain of ribonucleotides called an oligomer that binds to the mutated part of the gene, effectively hiding the stop signal from the cell's protein-making machinery.
The result is a slightly shorter form of dystrophin that is missing the portion normally coded for by exon 51. Despite the absence of that fragment, however, the dystrophin is functional. Kole took a leave of absence from the university and has been working at AVI Biopharma in Bellevue, Wash., to develop the treatment. That company produced the AVI-4658 used in the trial, and partially funded the trial.
Antisense technology can also be used to block the replication of viruses, and new drugs based on it are currently being tested against the ebola and Marburg viruses, as well as against hepatitis C.
"When I first tried my approach in a test tube some 20 years ago, a reviewer of my manuscript commented that it was 'molecular gymnastics that would never amount to anything,'" Kole said in a statement. "Now we have evidence that it works and in an illness that has no other good therapeutic options."
Muntoni and his colleagues gave the drug for 12 weeks in a variety of doses to 19 British boys. Seven of the boys responded to the drug, primarily those receiving the highest doses of the agent. At the beginning of the study, the boys, on average, were producing about 2% of the normal levels of dystrophin. After 12 weeks, six of them who received the highest dose were producing 18% of normal levels of dystrophin. No significant side effects were observed. The team believes that longer administration of AVI-4658 will raise the proportion much higher, and are now organizing blinded clinical trials of the drug.
In an editorial accompanying the report, two Japanese researchers noted that the barriers to scaling up the treatment are much lower than those for gene therapy because the targeted RNA is unlikely to affect other cells in the patients' bodies. The approach might thus also be valuable for "developing treatments for other intractable hereditary neuromuscular disorders."
Posted by BA Haller at 7:31 PM
Wednesday, July 27, 2011
They came on wheels, bracing against the sun and heat to fight for a right some say they've never had - hailing a taxi cab.
About 150 wheelchair users, taxi drivers and supporters rallied outside the Convention Center yesterday to demand wheelchair-accessible cabs. Philadelphia is the only one of the nation's 10 largest cities without wheelchair-friendly taxis, said Juliet Marsala, executive director of Disabled in Action of Pennsylvania.
Marsala said DIA was preparing to file a lawsuit yesterday against the Philadelphia Parking Authority, which oversees the city's taxi fleet. The lawsuit asks that at least 50 cabs be wheelchair-accessible, she said.
Yesterday, dozens of protesters held signs targeting PPA Executive Director Vincent Fenerty.
But Fenerty said he and the Parking Authority support accessible taxis "1,001 percent."
"For anyone to say that me personally or my administration is against anything to do with wheelchair-accessibility is totally wrong," said Fenerty, who was paralyzed briefly as a teen from transverse myelitis. "I was there."
Fenerty said the authority doesn't have the power to force cabs to be accessible. All of Philadelphia's 1,600 cabs are owned by drivers or companies, and changes can be made only through state law or by owners themselves. Legislation to compel wheelchair-accessible cabs failed in 2006 and '10.
Meanwhile, people like German Parodi, a plaintiff in the lawsuit, must get around on their own.
Parodi, 27, of Northeast Philadelphia, said he wheels nearly 20 minutes every day, rain or shine, to take classes at Community College of Philadelphia.
And Michelle McCandless, 44, of Center City, said public transportation isn't an option.
"Sometimes the bus drivers won't even stop," McCandless said. "And paratransit can get there hours late."
On Saturday, McCandless had to wheel home after having a minor seizure in the Gallery. "There was no taxi to take," she said.
Posted by BA Haller at 5:06 PM
San Francisco Examiner:
“I see what you mean,” says Belo Cipriani (pictured) — but actually, he doesn’t. The expression is one of many reflexive but inaccurate idioms that persist as part of his daily conversations, even though he lost his sight as the victim of a violent crime in 2007.
That experience moved him from writing personally to writing professionally and creating “Blind: A Memoir.” He is one of seven writers with disabilities gathering at the San Francisco Public Library July 26 to read from their works and mark the 21st anniversary of the signing of the Americans with Disabilities Act.
You needn’t apologize to Cipriani, 31, for making an unintended verbal gaffe with regard to his lost sight. “I’m used to it. Blind people are less than 1 percent of the population,” he says. “When I meet someone new, I’m often the first blind person they’ve encountered directly.”
For Cipriani, experiencing the ADA in action had an unexpected effect. “I think I became more patriotic after becoming blind,” he says. “Once I got my doomsday prognosis — the ‘we’ve done everything we can’ speech from the doctors — I was contacted by federal and state agencies and nonprofits. Within days I had people at my house training me in my new life.”
He attributes that responsiveness to a society that embraced legal guarantees of equal rights for the disabled. “I don’t think I’d be where I am now without the ADA,” he says. “It definitely gave me a launching pad to advocate for myself.“
Assistive technology plays a large part in his life now. “I use a standard laptop, but with an application that reads back what I type. I also use a digital recorder, because if I’m inspired with an idea I can no longer rely on pen and paper to jot it down.”
Having these tools is a double-edged sword.
“There’s definitely a sci-fi aspect,” he says. “I rely on all these voices and machines. They are expensive and sometimes they break. On the other hand, I can change voices on some of the programs and have found that switching between male and female voices can actually help with the editing process.
“I make the best of the tools available to me and, through them, writing has become something where I am able to produce a product that has value.”
Joining Cipriani in the Koret Auditorium are Bridget Brown, Amber DiPietra, David Fish, Jennifer Gibbons, Michelle Puckett and Derek Zarda. A reception precedes the readings and a book sale follows. The Main Library is wheelchair accessible. Assistive listening devices and real-time captioning will be provided.
An associated exhibit, “Unique Views of Life,” is on view in the Koret display case. The show features paintings, photographs and drawings of Urbsters (Urban Monsters) by artists Richard Chapman and John Ross Quevedo, who help viewers understand how people with vision impairments see the world.
Posted by BA Haller at 5:03 PM
Tuesday, July 26, 2011
In Russia, disabled man builds DIY chairlift after waiting 6 years for council to install elevator in his building
The Daily Mail in the UK:
Fed up with waiting for the local council to come good on a promise to install an elevator in his apartment building, Dmitry Bibikow literally took matters into his own hands.
The 32-year-old Russian, disabled in a climbing accident, was told when he bought his fifth-floor apartment that an elevator would be installed in the building, to help him get in and out each day.
But, as days turned into weeks, months and years, Mr Bibikow was forced to employ the help of his friends every time he wanted to leave or return to his home in Voronezh, in western Russia.
Fed up, he decided to build his own elevator of sorts - a chairlift that raises him and his chair up the outside of the building to his fifth-floor balcony.
He said: 'When I bought the flat I had been told an elevator would be built - but after waiting six years I decided to take matters into my own hands.'
He added: 'Living on the fifth floor without a lift was a nightmare because I couldn't get in or out of the block without someone's help.
'It was like being in a prison - so I decided to sort it out myself.'
With a little the help from his friends, the former sky diver and mountaineer built his own personal lift to haul him up the side of the building.
When not being used, the winch stays up on the fifth floor. It can be lowered by hand or electronically from ground level.
Now Mr Bibikow,married and a father of one, says he can get in and out within minutes and can even beat his neighbours to the fifth floor.
He said: 'I used to do a lot of mountaineering before I had an accident which crippled me, so my arms are really strong and I can get from my flat to the ground and back up again before other people living on the same floor.'
It is uncertain whether the authorities will allow Dmitry to keep his home-made chairlift - but the council is keeping a tactful silence on the matter.
Posted by BA Haller at 10:28 PM
Monday, July 25, 2011
Colleen Starkloff: Decades after ADA became law, disabled people are still fighting for full inclusion
The St. Louis Beacon:
During one especially cold morning in January of last year, a disabled man who uses a wheelchair and ventilator , and his wife were heading for their office in the 100 block of South 11th Street in downtown St. Louis. They were accosted that morning by a woman, standing outside the building, smoking a cigarette.
She wanted to know why in the world a man in a wheelchair would be out in this weather. She wasn't placated by the obvious response from the man's companion that he, like many other St.Louisans, was simply on his way to work. It apparently didn't occur to the woman that some severely disabled people work every day.
Nor did she realize that the man dressed in warm clothes and on the ventilator was Max Starkloff (pictured), a nationally known disability rights leader who went to work daily until he died last December at age 73. He and his wife were on their way to the Starkloff Disability Institute, which they founded years after they created Paraquad, an organization that became a national force for the rights of the disabled.
Colleen Starkloff (pictured) used the story about that encounter with the woman to stress that biased and paternalistic attitudes toward the disabled remain an unfulfilled challenge of the Americans With Disabilities Act, which was signed into law 21 years ago this week.
"The ADA has had a tremendous impact on our society, but people's attitudes toward the disabled are not where they need to be," she says. "Attitudes still need to change. When they do, we'll experience the full promise of ADA of equality and independence for all people with disabilities."
She says Missouri has taken good steps on a number of fronts to change attitudes. One is a current History Museum exhibit, inspired by Max Starkloff, that focuses on ADA activities during the first two decades of the law. Colleen Starkloff also notes that a disability studies program has been set up at Maryville University.
In addition, she points to this year's new state law that designates October as Disability History and Awareness Month. The legislation gives school districts the option of providing instruction on topics relating to individuals with disabilities. The designation is included in HB555, one of two pieces of disability legislation that Gov. Jay Nixon signed less than two weeks ago. The other is HB648, which, among other things, gives disabled parents more protection on matters involving foster care licenses, adoptions and parental rights.
In signing HB648, Nixon noted that the Starkloffs had to fight many battles when they decided they wanted to have children. He said some adoption agencies rejected the couple because of Starkloff's disability stemming from a spinal cord injury.
"But they persisted -- as they did on everything that mattered deeply in their lives -- and eventually adopted three children," Nixon said earlier this month when he signed the two bills.
While pushing for the two House bills, the Institute and officials at Paraquad said they were pleased that the governor vetoed SB 188. Some groups had argued that SB188 would have would have weakened workplace protection for people with disabilities. Starkloff and officials at Paraquad say employment for the disabled was one area that needed more attention. Two of every three disabled persons are are said to be unemployed, Starkloff says. She adds that some work part-time because they don't want to lose certain benefits, such as Medicaid, which is affected by income.
Kirsten Dunham, public policy director at Paraquad, joins Colleen Starkloff in arguing that another big challenge centers on policies of inclusion for people with disabilities.
"I think we have seen a lot of progress in access for the disabled," Dunham says of ADA. "More attention is paid to new buildings being accessible. Attention is paid to sidewalks and curb ramps being accessible. But one of the future ADA issues is going to be making sure states are not segregating and isolating people with disabilities instead of providing them with support and services to make them fully included in communities."
Starkloff decries what she says is a tendency to push "the disabled into an institution because you need help with bathing, dressing, or getting out of bed. You can have those services outside of an institution and inside your home. That's a long fight we haven't won yet. It's the key to independence and quality of life of people with disabilities."
One topic that makes Starkloff beam involves how the built environment has changed as a result of advocacy and ADA. She cites City Garden in downtown St. Louis as an example.
"We promote the concept called universal design in the home and the community so that people with disabilities can be fully integrated with non-disabled people," Starkloff says.
"City Garden is a design that works for everybody. There are texture changes so people who are blind or have low vision can keep on the path and know when the path changes. You can reach and touch the art work. The water feature is flat, so you can get wet in your wheelchair and play in the water with your kids."
Posted by BA Haller at 11:38 PM
The Herald-Sun in Australia:
Melbourne's train operator Metro has come under attack from short-statured people, who claim the company has left with nowhere to sit and nothing to hang on to.
Metro this week rolled out modified carriages with some seats removed to create more standing room.
But for anyone who can't reach an overhead handle, or push through a crowded carriage to grab a handrail, life has become just a little bit harder.
Members of the Short Statured People of Australia have condemned the change, saying it is just one more reason not to use public transport, the Herald Sun reports.
Samantha Lilly, 22, (pictured) said the thought of entering a crowded carriage with little hope of a seat was "just horrible".
"My face is at bottom height, so a crowded train is horrendous," the 112cm university student said.
"It's quite scary. People don't know you are there and if they step back you can get trampled.
"If people can see you and know your intentions they let you through, but if they can't move they can't let you through anyway."
Trams are just as frustrating. Several years ago Ms Lilly was fined for not having a ticket, but she could not reach the vending machine. "A lot of us have that problem," she said.
"When I argued with them they told me to ask a stranger to buy a ticket for me. Eventually they dropped the fine, but I thought things would change. They haven't."
Sam Millard, 23, (pictured) is 120cm and also a university student. He stopped using public transport because he decided it was unsafe. "The hardest thing is getting on and off," Mr Millard said. "When things are really crowded it can be dangerous and you get bumped around."
Metro spokeswoman Geraldine Mitchell said the removal of seats would improve access to handrails.
"Our assessment of the congestion near the door areas has proven there is limited access to handrails for all heights," she said.
"This change will ease congestion and improve customer flow, providing better access to handrails."
Posted by BA Haller at 11:33 PM
Friday, July 22, 2011
British TV reality dating show for people with Tourette’s, autism, "The Undateables," to premiere in 2012
The Sun in the UK:
A TV dating show will feature single people with Tourette's.
Channel 4 series The Undateables hopes to prove there is someone for everyone.
Tourette's syndrome sufferers often uncontrollably shout swear words.
The four one-hour episodes - to be shown next year - also involve people with Asperger's syndrome, a form of autism, and sleeping disorder narcolepsy, who could nod off at any time.
Contestants will be paired up by a dating agency which has disabled and able-bodied people on its books.
Experts will be consulted to ensure the issues are handled sensitively.
C4 deputy head of factual entertainment Liam Humphreys said: "We want to challenge people's perceptions about what is considered to be 'normal', but ultimately, this isn't a series about disability. It's about a universal desire - to find love."
Posted by BA Haller at 8:10 PM
The Daily Telegraph in Australia:
Some parents and doctors are colluding to deliberately misdiagnose school children as autistic so they can get help for other problems, a medical professional claims.
Parents are seeking the autism "label" because funding for the condition has increased and more assistance is available for autism than for other conditions.
The practice may partly explain a huge rise in the number of public school students with autism - up by 165 per cent over the past eight years.
Rates of other mental health diagnoses have increased by 75 per cent since 2003, according to the state government's submission to a federal review of funding for schooling.
Clinical psychologist and manager of diagnostic assessment services at Autism Spectrum Australia Vicki Gibbs said there were various reasons for the surge in the number of children diagnosed with autism.
"The most obvious is that people are more aware of it than before and people are also more aware of the more subtle forms of autism. Another reason is autism now attracts more funding, especially in the early intervention years."
Ms Gibbs said there was a small group of people happy to have their children diagnosed with autism because giving them a label was the only way they could get help.
"Some diagnosticians will give the child that label even when they don't meet all the criteria," she said.
"It's the only way they can get help with their problems."
Posted by BA Haller at 7:41 PM
Thursday, July 21, 2011
PBS News Hour:
The December 2004 tsunami that killed more than 200,000 and wiped-out thousands of communities on the shores of the Indian Ocean was especially devastating to the people of Aceh, Indonesia.
A province on the northern tip of Sumatra island, Aceh was the point of land closest to the earthquake epicenter, and had the highest concentration of deaths in the region -- around 170,000 people. Entire families were killed. Parents had children swept out of their arms; the loss of life and property was staggering and deeply traumatic for all those who survived.
But what few outsiders realized was that when the giant surges of water came to shore, the people of Aceh had been enduring trauma of a different kind for over three decades.
The region had been enveloped in a bloody civil war between the "Free Aceh Movement" and the Indonesian government. According to Harvard medical anthropologist Byron Good, many people affected by the war were already suffering from a variety of mental health problems.
"If you live through 20 years of violence, have been tortured or had to watch family members tortured, in those settings its not surprising that statistically levels of mental illness increase," said Good. "Depression, anxiety, psychosis, and PTSD increase. Those things were present in the high-combat areas in Aceh."
Despite the need for mental health care in the region prior to the tsunami, Good says there was little government funding for programs. There was one mental health facility in the capital city of Banda Aceh and four full-time psychiatrists for a population of four million. A bad situation got even worse when the tsunami struck; the Aceh Psychiatric Hospital was damaged, and many of its roughly 300 patients wandered off in the ensuing chaos.
Health experts say that grieving and emotional distress is normal after such a natural disaster and most people recover without any lingering mental health issues. But for some, psychological problems can persist for months, even years. While the exact numbers of people who suffered from mental illnesses after the tsunami are difficult to determine, the World Health Organization estimates that the prevalence of mild and moderate mental disorders in the general population is about 10 percent, and that can increase to 20 percent after a disaster.
More severe mental health problems can affect 2 to 3 percent of the population normally and increase to 3 to 4 percent after a disaster.
In the days and months following the tsunami, financial donations from around the world began pouring into Indonesia and other hard-hit countries, and mental health care for victims quickly became a top priority. The Norwegian government spent close to $2 million to rebuild and expand the mental health hospital. Aid groups like Save the Children and Northwest Medical Teams organized art therapy activities for children. Hand puppets were used by a local organization to encourage children to talk about their experiences. And a variety of organizations offered direct mental health counseling and treatment to adults suffering from a host of ailments ranging from depression to psychosis.
But according Dr. Pandu Setiawan, former director of mental health in Indonesia during the tsunami, the most significant program was the training of hundreds of local nurses to do community outreach and to look for people suffering from mental illness.
"We realized we didn't have a mental health system at all when the tsunami happened so we needed a new model," said Setiawan. "We didn't want the focus to be on the mental health hospital. We wanted to reach people on the community level so we trained general health nurses to work with survivors on the village level."
Those specially trained nurses referred people who were suffering from significant mental health problems, and who needed medicines, to general practitioner doctors who were also given intensive mental health training.
Despite all the attention placed on mental health care following the tsunami, Harvard's Byron Good says funding has largely dried up in the last few years and he places much of the blame on outside aid organizations.
"Humanitarian agencies often talk about moving from immediate disaster stabilization, which they are often very good at, to an intermediate stage providing longer term shelter to people, and then to a third stage of development which they turn over to someone else," said Good.
"In areas like mental health care, which is not a high priority for development agencies, that third stage of somehow passing it along to someone else is seldom really done."
Posted by BA Haller at 8:09 PM
Wednesday, July 20, 2011
Hello Little Lady:
BBC story about the new documentaries:
Jasmine Burkitt’s (pictured) latest documentaries, Small Teen, Bigger World, started on BBC Three on Monday 11th July.
The four-part series follows Jazz as she leaves home to start college to find her feet in the world and meet her Dad for the first time.
BBC story about the new documentaries:
What is it like to leave home when you have restrictive growth disorder and live in a world geared towards people much taller than you?
"We can't just walk down the street and not be laughed at, or pointed at or pointed out.
"It's like walking out in a ridiculous costume and everyone looking at you."
Standing at just under 4ft tall (121cm), 17-year-old Jasmine Burkitt (who is known as Jazz) has a rare form of dwarfism, or restricted growth disorder.
Dwarfism is the term is commonly used to describe people with a final adult height of 4ft 10in (147cm) or less.
There are estimated to be several hundred conditions that can cause restricted growth - these can cause proportionate or disproportionate restricted growth.
Jazz, who inherited the condition from her mother, was bullied at school for her size and has to adapt how she lives day-to-day to cope with the bigger world around her.
"I was badly bullied about my size at school so I had to leave when I was 13.
"A boy picked me up and then he just dropped me again, but I landed on my knees and that really did damage my knees quite badly."
Jazz's mother decided to home-school her instead, which Jazz says has also given her the opportunity to cook, clean and learn to get by with her condition.
Last year Jazz followed her passion for animals and left home for the first time to go and study animal welfare at Llysfasi College in Ruthin, Denbighshire.
"I was worried being at college would be like being back at school where I was bullied.
"But here, no-one sees me as any different. I'm just Jazz," she says.
She has a specially-adapted room at the college, with a lowered shower and step ladders so that she can reach shelves.
"Being small hasn't held me back at all and the staff have done loads to make sure I fit in.
"We have to wear a lab coat. Everyone was picking small, medium and large lab coats and I was like - there's no way I'm going to fit in even the small one.
"So the college had the company measure one perfectly, and it looks like any other ones but for me. And I'm not joking, I almost cried."
Her decision to leave home was tough, as she is her mother's registered carer, and their shared understanding of their condition means they are very close.
But she does not regret her decision to leave. "I wanted my own little bit of independence... and I love it."
Jazz's father was addicted to drugs, and her mother cut off contact with him when she was born.
Jazz decided to get in touch with her father and met him for the first time.
"I wanted to find out what makes me, me," says Jazz.
He has now become a part of her life, and both share a love of animals and a similar sense of humour.
"It has been really difficult... and harder emotionally than I thought it would be.
"I feel everything's whole now, I'm not missing anything."
Jazz has never wanted to find out which specific form of restrictive growth she has.
Her mother endured painful and extensive tests as a child, including skin grafts, carried out by doctors trying to research her condition and find how to cure it.
"We're pretty unique in that way," says Jazz.
"We don't want people knowing what it is, and then getting the scientists to remove it, and stop (people) having children like this."
There are a number of restrictive growth disorder treatments including growth hormone injections and surgery to lengthen short arms and legs.
But Jazz says she has never considered altering her natural height.
"I was born with this condition - I learnt to walk with this condition, I learnt to do everything with this condition.
"It's not something I separate from me, it's very much a part of my life. And I embrace that and I would never change myself.
"It's because of my condition that I don't want to have any limits."
Posted by BA Haller at 9:53 PM
The Boston Herald:
A GQ magazine online feature that uses insulting terms to declare Boston the “worst-dressed” city in America takes a shockingly low blow at the mentally challenged.
The scathing fashion review posted on the magazine’s Web site lists Boston at No. 1 in its “40 Worst-Dressed Cities in America” list. GQ sneered: “Boston is like America’s Bad-Taste Storm Sewer: all the worst fashion ideas from across the country flow there, stagnate and putrefy.”
The Web site’s blurb then delivers an astonishing jibe: “Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome.”
Efforts to reach GQ for comment late yesterday were unsuccessful. Advocates were stunned by the slur, which began circulating through Facebook July 15.
“I’m horrified,” said Dafna Krouk-Gordon, president and founder of TILL Inc., a Massachusetts nonprofit that provides community programs for people with disabilities. “This is vile. It sets us back as having to work so hard to eliminate the stereotypes that people with any kind of disabilities have had to live with for hundreds of years.”
“They are doing societal damage by using those kinds of examples. It is especially hurtful for someone with Down syndrome who would not be in a position to advocate for themselves,” Krouk-Gordon said.
Melanie McLaughlin, whose 3-year-old daughter, Gracie, has Down syndrome, said, “It makes you feel like somebody really stabbed you in the heart. It’s the only way you can put it. It hurts. It really hurts.”
McLaughlin, a volunteer with the Massachusetts Down Syndrome Congress, found out about the GQ slur through a network of activists, volunteers and parents on Facebook.
“I’ll be writing a letter to the editor and say, ‘How dare you?’ ”
In May, Miami Heat star LeBron James was widely criticized after blurting out, “That’s retarded,” in response to a question during a postgame press conference in Boston. James initially defended his remarks but apologized two days later.
Posted by BA Haller at 9:33 PM
Tuesday, July 19, 2011
The NY Times:
A man wakes up one morning to find that he cannot make out the details of a picture on the wall. His wife’s face, too, has become a blur. A trip to the ophthalmologist reveals he has macular degeneration.
His story isn’t unique. More than eight million people in the United States have macular degeneration, a disease that generally affects people over the age of 60. (A related condition, Stargardt’s disease, affects children as young as 6.) Both conditions rob people of their central vision, and with it their independence and ability to function without devices to help them read and navigate.
There are two forms of macular degeneration: dry and wet. The symptoms of both are the same, and neither type can be cured — although some treatments are now available to slow the progression of the wet form.
The course of the disease varies from patient to patient. Some patients become legally blind, while others just need a few tools to get by. Below, two people living with macular degeneration or Stargardt’s disease talk about the world as they see it. The excerpts have been condensed and edited for space.
Hear more from these patients and others in an interactive feature.
Charlotte Isen, Boca Raton, Fla.
My husband and I were playing golf. On the 14th hole, I was chipping up toward the flag, and suddenly, instead of seeing one ball rolling up there, I saw two balls wobbling up toward two strange-looking flags. I became terribly upset and almost hysterical, and I said to my husband, “I have macular degeneration.”
I went from doctor to doctor seeking the magic bullet that was going to cure me. At that time, they were doing laser treatments. Unfortunately, that was bad because those laser treatments left scars in the eyes. So that What we thought was helping us was really making things worse for us.
Everyone I know that suffers from macular degeneration has a sense of loss, because so many things that one was once capable of doing, one is no more. That loss of independence is a very, very difficult thing for people to bear.
Jim Bernardin (pictured), 25, Chicago
I have’m a person with an extreme visual impairment, but I get by pretty well and people don’t realize it. Oftentimes, I’ll meet people face to face, we’ll have a great conversation, and then the next day I’ll walk right by that person, having not seen them. Then they’ll be, like, “Why didn’t he say anything?” Having Stargardt’s disease, I think it’s really important to tell people right off the bat.
I realized in college that one of my symptoms was that I wasn’t looking people in the eyes. Looking someone in the eyes is a really important social agreement we have to let other people know you’re a normal person. Well, I’ve basically taught myself how to fake eye contact. It’s something I do to convey to other people that I’m not a weirdo.
We live in a sighted world of 12-point font and smaller, and it’s tough. It’s kind of a crappy deal of the cards, but there are worse hands to be dealt.
Posted by BA Haller at 1:01 PM
Monday, July 18, 2011
The Associated Press. In the picture, Mary Nonnette , right, with her mother Dorothy Greewood, at the Adult Day Health Care center in Los Angeles. Deep cuts in the state\'s Medicare spending may gut adult day care programs that give seniors a safe place to spend their days while their relatives are at work.
LOS ANGELES — Born with cerebral palsy, Jennifer McPhail relies on a home health aide to help her get dressed for work and ready for bed at night.
Her motorized wheelchair keeps her active, working as an organizer with a disability rights group in Austin, Texas, and volunteering to help people find housing and to staff hurricane shelters. She now fears deep cuts in the state's Medicaid spending will prevent her from living independently.
"What it says to me is that the state doesn't value the lives of people with disabilities," said McPhail, 39. "A lot of people are going to be hurt in a very intimate way."
It's a concern facing families across the country as states with gaping budget deficits cut home health services that help keep the elderly and disabled out of nursing homes. States are reducing how much time a nurse can spend making house calls and ending meal deliveries for the homebound. Many also are gutting adult day care programs that give seniors a safe place to spend their days while their relatives are at work.
Aging and disability services in three out of four states have been reduced over the last two years or face cuts, even though demand is increasing.
Texas lawmakers underfunded Medicaid by nearly $5 billion in the state budget, a move that home health advocates say leaves the elderly and adults with disabilities unsure how their care at home will be provided.
California eliminated funding for about 330 adult day centers, a move that will affect some 35,000 seniors who use them for medical care and socializing. Lawmakers are hoping to restore about $85 million to transition seniors into an as-yet undetermined alternate program — about half the amount cut from the budget.
Minnesota is considering cuts to home health aides and a program that allows disabled people to live on their own.
With each cut, the ability to live at home becomes more difficult.
"You end up losing control over your decisions," said Neil Johnson, executive director of the Minnesota HomeCare Association.
About 12 million people receive home health services nationwide, according to the National Association for Home Care and Hospice.
Home health services are an easy target for budget-cutters because they are not required by federal law, have been subject to fraud and don't have deep-pocketed special interests advocating for them. But down the road, steep cuts in these services eventually could cost states more money if they end up pushing more people out of their own houses and into nursing homes that would require taxpayer subsidies.
"Just because you cut the budget doesn't mean their needs go away," said Anita Bradberry, executive director of the Texas Association for Home Care & Hospice Inc.
Medicaid, the state-federal program that pays for medical and long-term care for the poor and disabled, is generally required to help fund nursing homes but not home care and community services.
Because the programs are not required, most states first look at cutting home health care funded through Medicaid, even though such programs are much cheaper than nursing homes.
The price of an adult day health center is $67 a day on average, compared with $229 a day for a private room at a nursing home, according to a 2010 survey released by insurance company MetLife Inc.
Overall, Medicaid spending on nursing homes came to $46.5 billion in 2007, the latest figures available, while home health services cost $6.3 billion, according to the U.S. Department of Health and Human Services.
Before the recession, states actually expanded home health programs because they are less costly. But now, with so many states facing billion-dollar deficits, lawmakers say they have no choice but to cut Medicaid spending, the second-biggest spending item for states behind education.
South Carolina is ending payments for adult dental and vision care. In Massachusetts, Gov. Deval Patrick has proposed cutting $55 million from the state's adult day care program, two-thirds of its funding. That would affect some 5,200 participants.
Among them is the 81-year-old mother of Irva Almonor.
She agonized for months over what to do with her mother, who was forgetting to take her diabetes medicine and turn off the stove inside the Massachusetts home they share, before enrolling her in an adult day center.
The family feared she would hurt herself — or worse — while she was alone, and she resisted any thought of going into a nursing home.
Without the adult day health care centers, Almonor's only choice would be to leave her mother, who suffers from diabetes and mild dementia, alone again at their Holliston, Mass., home. Quitting work wasn't an option, and hiring a home health aide would cost her about $21 an hour.
"Financially, I can't afford to have anyone to come take care of her," she said.
One problem for home health care programs is image. Some lawmakers are skeptical of the industry that provides the services and say lax regulation makes the program susceptible to fraud.
In April, a home health care provider in Virginia pleaded guilty to fraud charges after federal prosecutors said the company failed to provide required training for personal care aides and issued false certificates.
A New Mexico woman was sentenced to three years in prison in January after she and another woman were convicted of claiming to be each other's caregivers and getting more than $96,000 in Medicaid benefits.
Investigators in Florida a year ago found that when they tried to visit 16 home health agencies, there were no such businesses at the addresses.
"Home health care appears to be experiencing fraud and abuse issues that are significantly increasing spending on home health care," said a report released last year by the Medicare Payment Advisory Commission, an independent arm of Congress.
The report went on to say the number of home health care agencies has risen dramatically in states where fraud concerns have emerged, including California, Texas and Florida.
Home health advocates say that kind of bad behavior is rare and that cutting funding only hurts people who need the most help.
In most cases, it's the family members who provide much of the care for the elderly and disabled at home — and usually for free — even if they get help from home-health aides.
Among Alzheimer's patients, nearly 15 million caregivers are family members and friends who provide unpaid care, said a report released in March by the Alzheimer's Association. Home health services often bridge the gap when family members are unable to provide around-the-clock care.
Adult day care centers provide another avenue for the frail and their caregivers, but those programs also are on the wane.
Several states have been chipping away at adult day care programs over the last year and some have eliminated them, even though the number of facilities has grown by a third since 2002, according to a 2010 study from the National Adult Day Services Association.
Mary Nonnette, who lives in Hawthorne, Calif., isn't sure how she will take care of her mother if she is no longer eligible to stay at one of the centers in Los Angeles.
Nonnette, 67, said she does everything for her 87-year-old mother "except breathe, really," and that she has provided the care alone since her husband suffered a paralyzing stroke in December. The only time she's free to visit her husband is when her mother is at the center.
"For four hours, three days a week, I don't have to worry," Nonnette said.
It's not just home-health services for seniors that are under attack.
Washington state slashed how many hours it will reimburse professional caregivers who work with the disabled.
The changes that began this year mean home health worker Deborah Osborn, of Tacoma, Wash., had to cut 19 hours from the time she can spend with a 27-year-old developmentally disabled woman.
The state now limits her to 40 hours per week. That might still sound like a lot of time, but Osborn's client relies on her for assistance with everything from grocery shopping to dressing herself.
As a result, Osborn can help the woman shower just twice a week instead of three times. Laundry is limited to twice a week and grocery shopping is down to once a month. Any more state cuts will force the woman out of the home she shares with a family member, but it's too dangerous for her to live by herself, Osborn said.
"She's going to suffer the consequences," she said.
Posted by BA Haller at 11:47 AM