Saturday, February 28, 2009

Arrests of Final Exit members renews assisted suicide debate

From The AP:

KENNESAW, Ga. — The case against an alleged assisted suicide ring known as the Final Exit Network has revived a long-simmering debate about the right to die.

Two members of the network appeared in a Maryland court Friday and waived an extradition hearing on charges they aided the suicide of a 58-year-old Georgia man who suffered for years from cancer of the throat and mouth.

Two others also have been charged in the case, and authorities say the group may have been involved in up to 200 deaths across the country.

Voters in Oregon and Washington have legalized doctor-assisted suicide, and a district judge in Montana ruled in December that such suicides are legal there, though the state Supreme Court could overturn that decision.

But most other states have laws that carry stiff penalties for those found guilty of assisting suicide. People convicted of assisting in suicide in Georgia can be sentenced to up to five years in prison.

Advocates of assisted suicide pounced on the arrests, saying they're a signal that there should be renewed dialogue over end-of-life choices.

Barbara Coombs Lee, president of the national advocacy group Compassion and Choices, said lawmakers should consider changes to allow those suffering
with terminal illnesses to "die gracefully."

"We shouldn't make people feel ashamed for wanting a graceful exit at the end of their valiant fight," she said.

Critics, meanwhile, said the arrests highlight the drawbacks of assisted suicide groups.

"How is this not murder?" asked Stephen Drake of the group Not Dead Yet, an advocacy group for the disabled that opposes assisted suicide and euthanasia.

"This is predatory. These are people who get off on being there for death. They target certain types of people," he said. "And when we make laws, when we talk about people who want to commit suicide, we're getting into very dangerous territory."

Georgia authorities began investigating the group shortly after John Celmer killed himself in June. Celmer's mother says he had suffered for years from cancer, but authorities say he had recovered and was embarrassed about his appearance after surgeries when the network helped him take his life.

The group's members bristle at the term assisted suicide, saying they don't actively aid suicides but rather support and guide those who decide to end their lives on their own. Authorities, though, say the group blatantly violated the law.

Thomas E. Goodwin, the group's president, and Claire Blehr were both arrested Wednesday in metro Atlanta. They were released from jail overnight on $66,000 bond each, authorities said.

"We believe he will be vindicated," Goodwin's attorney Cynthia Counts said Feb. 27. "He is innocent."

A woman inside Blehr's home in an upscale Atlanta neighborhood did not answer Friday morning when reporters knocked on the door, and a woman at Goodwin's office in Kennesaw asked reporters to leave.

Maryland authorities arrested the group's medical director, Dr. Lawrence D. Egbert of Baltimore, (pictured) and Nicholas Alec Sheridan, a Baltimore man who is a regional coordinator for the group. The two waived an extradition hearing Friday, and a judge ordered them held until Georgia authorities pick them up or allow them to travel on their own.

According to court documents in the case, Blehr detailed each step of the process to an undercover agent who infiltrated the group claiming to be interested in committing suicide.

Blehr told the agent that he would place the hood on top of his own head, like a shower cap, and then inflate it by turning on the helium tank. After a few breaths, she told him the "lights would go out."

The guides would then let the helium tanks run for 20 minutes after they last felt his pulse to make sure he was dead. They would also stand by his side to ensure he didn't pull the bag off his head, according to the documents.

Jerry Dincin, the Final Exit Network's vice president, disputed the claims made in court documents.

"That's nonsense," he said Friday. "We hold your hand because we feel a compassionate presence means you hold someone's hand. They need to be with someone in their last minutes. No one pulls off any hood. This method is so quick and so sure and so painless."

Some legal experts said they hope details of the network's work would help stoke a deeper discussion about assisted suicide. William Colby, an attorney who is a fellow with the Center for Practical Bioethics, said prosecuting the group wouldn't support that goal.

"People are trying to understand how we navigate the end of our lives, and we need to keep talking about it," said Colby. "But trying to round up people in groups on either extreme end of our social spectrum is not necessarily the best way to move public dialogue."

Georgia prosecutors will seek to prove the four violated the state's 1994 assisted suicide law, which defines assisted suicide as anyone publicly advertising or offering to "intentionally and actively assist another person" in ending their life.

Dincin called the prosecution "the epitome of stupidity."

"This is a travesty of American justice," he said. "I'm so insulted.

The GBI should be flushed down the toilet. They have judged us and ruined us before we have gone to court."

The group's members didn't actively aid the suicides, but directed members to a manual called "The Final Exit" to guide them through the process, Dincin said.

"If this case goes to court, we'll be dealing with the notion of what is 'assistance,'" he said. "If we point somebody to a book, maybe that's considered assistance in the courts. But we don't think so."

President Obama adds another disability adviser in area of HIV/AIDS policy

From the AAPD Justice for All blog:

President Barack Obama today announced the appointment of one of the nation's leading public health policy experts as the Director of Office of National AIDS Policy.

Jeffrey S. Crowley, MPH, (pictured) Senior Research Scholar at Georgetown University's Health Policy Institute will coordinate the federal government's efforts on HIV/AIDS policy and will help guide the administration's development of disability policies.

"Jeffrey Crowley brings the experience and expertise that will help our nation address the ongoing HIV/AIDS crisis and help my administration develop policies that will serve Americans with disabilities," said President Obama. "In both of these key areas, we continue to face serious challenges and we must take bold steps to meet them. I look forward to Jeffrey's leadership on these critical issues."

The Office of National AIDS Policy (ONAP) is the White House Office tasked with coordinating the continuing efforts of the government to reduce the number of HIV infections across the United States. The office emphasizes prevention through wide-ranging education initiatives and also helps to coordinate the care and treatment of citizens with HIV/AIDS. The President has made a strong commitment to developing a national AIDS strategy, which will be a top priority for the Office of National AIDS Policy.

In addition, ONAP coordinates with international bodies to ensure that the fight against HIV/AIDS is fully integrated around the world. The ONAP is part of the Executive Office of the President's Domestic Policy Council (DPC).

Jeffrey S. Crowley's Bio:

Jeffrey S. Crowley, M.P.H., is a Senior Research Scholar at Georgetown University's Health Policy Institute and a Senior Scholar at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. In these roles, he is recognized and respected for his capacity to integrate public health research with political strategy to achieve policy changes.

He has authored numerous reports and policy briefs, and has testified before various Congressional Committees and the Institute of Medicine on several occasions. His primary areas of expertise are Medicaid policy, including Medicaid prescription drug policies; Medicare policy; and consumer education and training.

Crowley previously served as the Deputy Executive Director for Programs at the National Association of People with AIDS (NAPWA). While at NAPWA, he helped implement several key initiatives including The National HIV Testing Day Campaign and the Ryan White National Youth Conference.

Crowley has spent the last fourteen years working to improve access to health and social services for people living with HIV/AIDS, people with physical and mental disabilities, low-income individuals, and other vulnerable populations. His writings have been printed in numerous publications and journals.

Crowley received his Master of Public Health from the Johns Hopkins University School of Hygiene and Public Health, and his Bachelor of Arts in Chemistry from Kalamazoo College. He is also an alumnus of the United States Peace Corps, where he served as a Volunteer/High School Science Teacher at the Nsongweni High School in Swaziland.

Friday, February 27, 2009

N.Y. high school students take second place in assistive technology competition

From Newsday's Huntington Local blog:

Team Commack took second place Thursday in the 2009 JETS/AbilityOne NEDC National Finals Competition, held in Arlington, Virginia. The Junior Engineering and Technological Society (JETS) sponsors a National Engineering Design Competition (NEDC) annually that challenges students in grades 9-12 to design and build an assistive technology device to help a person with severe disabilities to succeed in his or her workplace.

Commack High School students have succeeded in meeting that challenge, and the team’s design product was one of five finalists in the nation. The students’ all-out effort was a redesign of the reception area at United Cerebral Palsy of Suffolk (UCP) with their product called NOW (New Office Workspace), a custom-made universal integrated system of products to meet the needs of an individual with cerebral palsy in the workplace (pictured).

The Commack Cougars team's number two spot for Outstanding Assistive Technology Design was accompanied by other honors. The team was awarded "Best Display" for their visual presentation by the American Society of Heating, Refrigerating, and Air-Conditioning Engineers, and "Best CAD Design" (Computer Aided Drawing) by the SolidWorks company. The Commack Cougars received a monetary award of $1,500 along with two trophies and a plaque. Each of the 15 team members received a gold medal for their innovative solution.

NOW was inspired by Jerina Porterfield, UCP’s receptionist, one of the many individuals affected by Cerebral Palsy. The team designed NOW to meet the
needs of Jerina, and potentially thousands of other individuals, affected by Cerebral Palsy in an office environment. There are no products currently available for purchase that come close to the features of the NOW. The NOW system extended Jerina’s limited reach with the installation of three pull-out Plexiglas surfaces on the desk. A photocopier was mounted on a lazy Susan on the center Plexiglas surface.

To assist Jerina with the organizational requirement of her job, two rotating filing shelves were designed and attached them to the outer Plexiglas surfaces, also on lazy Susans. Additionally, an extendable shelf drawer was installed above her head in a cabinet. An electromechanical elevating drawer was installed on the lower right hand side of Jerina’s desk to allow Jerina to safely access materials in the drawer. The combination of these components of the NOW will increase Jerina’s productivity, ultimately fulfilling the team’s goal of helping people with disabilities in the workplace.

The team was accompanied to the competition by advisors Leslie Kaplan, Richard Kurtz and Joseph Castrogivanni, and Commack High School Assistant Principal Catherine Nolan, who were thrilled to showcase the NOW team and project. Celebrating the win, in a phone call from the competition, Nolan said, "As educators, we feel incredibly privileged to have experienced the NEDC competition. It was an opportunity to witness our remarkably talented students at their best, whereby they harnessed their individual strengths collaboratively embracing their mission to enhance the lives of others."

"The students worked extremely hard on this project, and the outcome was evident in their design and presentation," said Leslie Kaplan, advisor to the Cougars and high school technology teacher. "Their dedication to improve the quality of life for others is immeasurable."

The team also produced a detailed report and very professional video of the design, construction, and utilization of the NOW as a requirement for the competition finals.

The national finalists competing were:

  • Team: Engineering Design Class. Device:The Syringe Holding and Guidance System (SHAGS). From: Bishop Kelly HS, Boise, ID.

  • Team: Commack Cougars. Device: The New Office Workspace (NOW). From:
    Commack High School, Commack, NY.

  • Team: Catapultam Habeo. Device: The Handy Typer. From: Grand Rapids Catholic Central High School, Grand Rapids, MI.

  • Team: SUA. Device: The Lift-a-tray. From: St. Ursula Academy, Toledo, OH.

  • Team: Eagles. Device: The Easy Access Transport System (E.A.T.S.). From: Wethersfield High School, Wethersfield, CT.

More on efforts to save albino people in Tanzania

An article in the National Post in Canada. In the picture, Albino children take a break at the Mitindo Primary School for the blind, which has become a rare sanctuary for albino children. The New York Times published an article on Peter Ash last week.

To the vicious hunters of northwestern Tanzania, she is "zeru zeru" -- invisible, inhuman, a ghost.

Under cover of darkness, a group of men charge into young Viviana's room in the middle of the night, pin her pale form immobile, and hack off one of her little legs as her sister screams in horror.

Viviana, shockingly, is among the lucky ones. The commotion draws the attention of neighbours, and the attackers slip off into the night without finishing the job. She is left an amputee, but alive.

The single albino leg will fetch upwards of $1,000 in a gruesome market controlled by powerful Tanzanian witch doctors, who grind the bones into potions and repurpose them as good luck charms for struggling miners and fishermen.

The story sounds apocryphal, yet albinos are shunned and subject to social discrimination in many parts of Africa. There are reports of albinos being murdered in Burundi, and in Tanzania many albinos fear being kidnapped, dismembered, murdered.

Deep-seated discrimination against people with albinism - a genetic condition that causes an absence of pigmentation in the hair, skin and eyes - lies at the root of a "pure and unadulterated genocide," said Canadian philanthropist Peter Ash, the Surrey, B.C.-based founder of Under the Same Sun, a non-profit group dedicated to helping end the slaughter in Tanzania. It has claimed at least 45 lives by the official count, but he believes the real number may be closer to double that.

"Most often if they hack off both legs, or legs and an arm, they bleed to death really quickly," Mr. Ash said. "In some cases they slit the throat first and drain the blood into a pot. One mom we visited told how they came in and slit the girl's throat, and drank the blood on the spot.

"Most children don't survive."

An albino himself, Mr. Ash empathizes deeply with the victims. He has snow-white hair and pale skin that is exceptionally vulnerable to the sun. Like most people with albinism, he is also legally blind.

He remembers being called "whitey" and "snowflake" as a child, beat up by his peers because he was different. One day, as he was bent over his combination lock, squinting with his weakened eyes to read the numbers, a couple of children in the school hallway caught his attention with a shout of "hey, albino."

"They took my head and rammed it into my locker," Mr. Ash recalled.

But with the support of his family, Mr. Ash says he has built a strong sense of self-confidence upon his own uniqueness.

When he heard about the killings in Tanzania, which came into the public spotlight in late 2007, he knew he had to act, and launched Under the Same Sun in March of the following year. In addition to educating the international community about the ongoing atrocities, the group hopes to put pressure on the Tanzanian government to guarantee equal protection for albinos under the law. The country has a significantly higher rate of albinism than other countries -- about 1 in 3,000 compared to 1 in 20,000 for Europe and North America.

The campaign of violence against them has earned harsh condemnation internationally, and the United Nations has called for "concerted action" to end
the spate of murders and bring perpetrators to justice. Mr. Ash's group this month laid additional pressure on the UN to appoint a special prosecutor to assume control of the investigation.

Conservative MP Mark Warawa has also been pushing the cause in Ottawa through discussions with Deepak Obhrai, parliamentary secretary for Foreign Affairs, who is set to meet with Tanzanian officials in March.

Visiting Tanzania for the first time in October, Mr. Ash recalled feeling vulnerable both as an albino and as a vocal critic of the local government's response to the killings.

Despite public rebukes of the slaughter by Tanzania's leaders and a wave of more than 200 arrests, including several police officers, there has yet to be a single conviction.

"Albinos don't know who to trust," Mr. Ash said. "Public statements are great; arrests are great; but until someone's actually held accountable and actually been prosecuted, to us it all doesn't matter because the murders keep going on."

Perhaps even more frightening than the possibility of official complicity is the fact that in almost half the cases of albino killings, the victims are sold out by family or friends looking to cash in.

Thousands of other albinos throughout the continent are killed as infants by mothers afraid their husbands would otherwise abandon the family.

"Because this belief exists that the albino is a ghost or an omen or a curse, what happens is the midwife takes the albino child out back, suffocates it or breaks its neck, and then the baby is buried and the father is told the child was stillborn," Mr. Ash said.

Those who survive past infancy become commodified, with a full set of arms, legs, hair, genitals and blood potentially yielding $30,000, the equivalent of about four decades' worth of wages in the developing country. In almost all cases, the parts are chopped off while the victim is alive, in accordance with mystical beliefs that a live sacrifice is more potent.

Local journalist Vicky Ntetema recalls meeting a family whose seven-month-old baby was "snatched from his mother's embrace in the middle of the night and left limbless outside the family hut, while just like a mother hen she protected the rest of the victim's siblings."

Other criminals desecrate graves of people with albinism to steal their bones.

"[Witch doctors] chop them up or grind them up, use them in potions or what's called a talisman, an object they will sprinkle blood on or infuse with body parts," Mr. Ash said. Fishermen use albino hair in their nets in the hopes of landing a bigger catch, while miners sprinkle the potions in their mines, believing it will yield more gold or diamonds.

The practice is most common in rural areas, where witchcraft is more deeply entrenched. Ms. Ntetema, who calls Tanzania home and believes its image has been deeply "tarnished" by these atrocities, has devoted much of her work to sounding the alarm on the persecution of albino citizens.

She is also urging police and government to take the killings more seriously by banning the activities of witch doctors and changing the law on licensing traditional healers.

Mr. Ash, who is planning to return to Tanzania in April to launch a local branch of Under the Same Sun, says such action is critical to the campaign for change.

He is also encouraged by the traction the issue has started to gain back home, acknowledging that he has helped shed light on horrors that will be new to many Westerners.

"A lot of that was just people weren't aware of it, and to some degree nobody wants to tangle with something this evil," he said. "You're looking evil in the eye when you do this."

San Diego spending $10 million a year to bring the city into ADA compliance

From the San Diego Union-Tribune. Great quote from my friend Cyndi Jones!

SAN DIEGO — The Kearny Mesa Swimming Pool is now much more inviting for disabled visitors.

Crews striped extra-wide parking spots to accommodate vans for the disabled, and a ramp was added for those who can't climb the stairs.

Locker rooms have been gutted to widen restroom, shower and dressing stalls for wheelchair users. The outdoor shower area has been rebuilt to eliminate a step, and easy-to-turn handles will be installed on doors. (The picture is of the restroom that was made accessible to disabled visitors at the swimming pool.)

Throughout San Diego, a growing number of public buildings and streets are getting retrofitted as the city steps up spending to tackle a backlog of projects to comply with the Americans with Disabilities Act.

San Diego used to spend about $1.5 million a year on such projects. Now it's spending $10 million more per year on curb cuts, ramps, audible signals and detectable warning tiles at street intersections, among other improvements to remove barriers to access.

Mayor Jerry Sanders has committed to spending the additional $50 million over five years to improve access, in part by allocating proceeds from the sales of surplus city properties.

“Before the mayor came into the office, we were just doing a trickle of projects. We are doing a lot of projects now,” said David Jarrell, deputy chief operating officer for public works.

Advocates for the disabled said the improvements would help cut down the city's liability. Cities across the country have been sued for failure to improve access. San Diego was sued in 1997 by disabled residents who claimed they had been denied equal access to Qualcomm Stadium. The lawsuit was settled after the city agreed to spend $5.25 million to equip the stadium with new elevators, ramps, parking spaces and seating.

Bill Harris, a Sanders' spokesman, said the desire to do the right thing – not legal exposure – drove the mayor's commitment to ADA compliance.

“It's not about avoiding litigation. It's about ensuring equal access,” Harris said.

According to the city, more than 500 curb ramps were installed in the past two years. About $19 million of projects are in design stages and an additional $4 million in jobs are under construction. Facilities being retrofitted range from police stations and recreation centers to branch libraries and teen centers.

Cindi Jones, director of the Center for an Accessible Society in San Diego, said improvements have been made, but the city still has a long way to go. She uses a scooter and her husband uses a wheelchair.

“When people say 'Oh, $10 million,' it sounds like a lot. This is like a down payment on what it's going to cost,” she said. “In truth, the city should have done this years ago. The ADA was passed in 1990. That's 19 years ago.”

In South Park, where she and her husband have lived for 30 years, a curb cut was installed on their block about a year ago, Jones noted. She's looking forward to more curb cuts in her neighborhood.

The city's former disability services coordinator, Linda Woodbury, had said the city needed to spend $500 million on ADA compliance, but the mayor's office has disputed that figure.

Woodbury was fired in 2006, a day after Sanders first proposed spending $50 million more on access projects. The city later settled a wrongful termination suit.

Louis Frick, executive director of Access to Independence in San Diego, said the access features benefit society as a whole.

“You see people all the time with baby strollers, delivery truck drivers, where they are using the curb cuts to get up and down the sidewalks,” he said.

“People naturally migrate to curb cuts and use them many times without realizing they are there to serve somebody with disabilities.”

British hacker with Asperger's may soon be extradited to USA

From the BBC News in the UK:

British computer hacker Gary McKinnon has lost the latest round of his battle against extradition to the US.

The Crown Prosecution Service refused to bring charges against him in the UK.

Mr McKinnon, 42, from Wood Green, north London, faces up to 70 years in prison if found guilty in the US of breaking into military computers.

His lawyers appealed for him to be prosecuted in the UK on lesser charges, but the CPS said the best place for the case to be heard was the US.

Glasgow-born Mr McKinnon has always admitted hacking into the computer systems in 2001-2 - which the US government says caused damage costing $800,000 (£550,000).

In total, he hacked into 97 government computers belonging to organisations including the US Navy and Nasa.

Mr McKinnon has always said he had no malicious intent but was looking for classified documents on UFOs which he believed the US authorities had suppressed.

He has signed a statement accepting that his hacking constituted an offence under the UK's Computer Misuse Act 1990.

The CPS said it found enough evidence to bring charges against the hacker under the act for obtaining "unauthorised access with intent".

But Alison Saunders, head of the CPS organised crime division, said: "The evidence we have does not come near to reflecting the criminality that is alleged by the American authorities."

She added: "These were not random experiments in computer hacking, but a deliberate effort to breach US defence systems at a critical time which caused well-documented damage.

"They may have been conducted from Mr McKinnon's home computer - and in
that sense there is a UK link - but the target and the damage were transatlantic.

"The bulk of the evidence is located in the United States, the activity was directed against the military infrastructure of the United States, the investigation commenced in the United States and was ongoing, and there are a large number of witnesses, most of whom are located in the United States."

Mr McKinnon's mother, Janis Sharp, said she was "heartbroken by the lack of compassion" shown towards her son.

"Gary is a gentle man with Aspergers - not a dangerous terrorist.

"His obsessions led him to search US computer systems. Wrong, yes, but extraditing him to a high-security prison knowing he won't survive - surely no-one can honestly believe that punishment fits the crime?

"We've suffered an agonising seven years which has ruined the lives and health of my family."

Mr McKinnon, who was arrested by British police in 2002, has already appealed unsuccessfully to the House of Lords and the European Court of Human Rights to avoid extradition.

His battle now rests on a judicial review of the government's decision to extradite him.

Last August, Mr McKinnon was diagnosed as having Asperger's Syndrome and his lawyers said he was at risk of suicide if extradited.

International women's group focuses on disability issues

From the February 2009 Table of Contents for The Women's International Perspective:

Long-time British Paralympian announces his retirement

From ESPN Star. It's nice to see some general coverage of Paralympians.

Welsh Paralympic star Neil Robinson has announced his retirement from following a career spanning 25 years.

The 50-year-old Robinson made his Paralympic debut at the Stoke Mandeville 1984 Paralympics and has competed at every Games since with his last appearance at the Beijing Games in 2008.

In Seoul in 1988, Robinson won his first Paralympic medal, team bronze, and then won team gold - with James Rawson - and individual silver.

He went on to become European singles champion in 1995 and again took individual silver at the 1996 Atlanta Paralympic Games before also becoming world number one in his classification.

Robinson said: "To play my last event in Beijing, the 'home' of table tennis was a nice way to finish. I just missed out on a medal there despite playing well but it was a great event to be involved in.

"The atmosphere in the arena was amazing - a very loud but informed crowd, it was real theatre.''

Robinson, from Bridgend, South Wales, added: "Table tennis is a very strong and competitive sport so I can look back on a very successful career and my two individual Paralympic silvers I won in this sport now seem like gold.''

Michigan autism insurance coverage case gets closer to class-action status

From the Detroit News:

DETROIT -- A federal court judge was poised Feb. 26 to grant class-action status to a lawsuit by parents of autistic children who want Blue Cross-Blue Shield of Michigan to pay for behavioral therapy, but agreed to give the insurer more time to file a response in the case.

U.S. District Judge Stephen Murphy told Blue Cross attorney Scott Hamilton that because there was no response from Blue Cross on the record as to why he should oppose class certification, he was willing to grant the motion. But because he was impressed with Hamilton's earlier arguments, he would allow the attorney time to file a response.

"Otherwise I will grant that motion as unopposed," Murphy said.

Christopher Johns, a Warren father whose 7-year-old son is autistic, is suing Blue Cross on behalf of people who have been denied claims on the basis that applied behavioral analysis treatment for their autistic child is experimental. Johns filed the suit in federal court in May and is seeking a class action because more than 7,000 children in Michigan have autism, a neurological disorder that can cause children to become withdrawn, nonverbal and avoid eye contact.

Data from the federal government shows that 1 in 150 American children has the disorder. Officials with the insurance group have said long-term studies on autism educational therapies have been inconclusive and the treatments are experimental. Michigan law doesn't mandate coverage for such therapies.

"Time is a real factor, in this case," said Gerard Mantese, Johns' lawyer. "Children with autism who are between 2 and 7 can make great progress with these programs. We want to move forward as fast as we can."

There's no cure for autism, but research shows that early intervention through intensive therapies and other services can improve development, according to the U.S. Centers for Disease Control and Prevention.

A profile of the man who helped invent closed captioning


WICHITA, Kansas - Wichita is home to some fascinating people -- some famous, some not. It's also home to a man little heard of, but his work has certainly been noticed by all.

To say Bill Kastner (pictured) loves electronics would be an understatement. His basement is filled with old radios and other gadgets that would look more at home in a museum. He likes his entertainment old school -- no Facebook or chat rooms. Bill does his social networking using a ham radio and Morse code.

"In high school I had a stammering problem, so I resorted to Morse code and that was a means of talking to people without having the stammering problem," Kastner said.

That childhood infatuation with radios led Kastner to pursue a career in electronics and he eventually earned his masters degree in electrical engineering from K-State.

After working on memory systems for the Minuteman Missile back in the 60's, Bill moved his family to Dallas where he started working for Texas Instruments.

"Thirty-two years have passed -- I guess it's time to come out and say I did something with my life," he said.

What he did with his life some 32 years ago at Texas Instruments has had a profound effect on everyone's life. Bill is the guy who developed and built the very first decoder that makes closed captioning on television possible.

"I designed original closed captioning decoder, other than my manager there were only two people that really designed the original closed caption mediums scale logic," he said. "I did the logic and the other guy was Joe Lynn, who did the interface to the television set."

In the mid 1970's Public Broadcasting contracted with Texas Instruments to design a device that would allow the deaf to read what was being said on air. The test for the Texas Instruments team was to decode a message.

"We had to decode that," Bill said. "One thing that happened was that PBS would not tell us on this tape they gave us what the message was. For the first decoded information and it turns out when we go the decoder running, it was 'float like a butterfly, sting like a bee.'"

Bill's decoder worked perfectly, but what he didn't take into account was how widely popular closed captioning would become.

"We thought in the beginning that there would be a decoder box that was sold at the time through Sears that would cost $250 and there would be a limited amount of those in the world," he said. "We never expected that FCC would declare in July of 1993 that all TV's 13 inches or larger would have a closed caption decoder built into them."

Now, everywhere he looks his invention is looking back.

"One of the interesting things is that I work out at the YMCA three times a week and I can sit there and look at the TV's on the display in front of me and think I did that, but yet I can't turn to the person next to me and say, 'Hey, I did that,'" he said. "No way. They wouldn't believe that."

He's really quite humble and shy even when asked about the role he played in broadcasting. In fact, people who have known him for years didn't know that he helped create closed captioning.

But he's equally content knowing that his work has helped bring words to those who could only see pictures.

Amputee group visiting DC to lobby for prosthetics insurance coverage

From Business Wire:

On March 10, the Amputee Coalition of America will have more than 150 amputees from across the country in Washington, D.C., urging Congress members to support fair insurance coverage for artificial arms and legs.

“Insurance companies are unrealistically limiting reimbursement of prosthetic arms and legs or summarily electing not to cover them at all,” said Kendra Calhoun, Amputee Coalition President and CEO. “We intend to turn this tide, and our Lobby Day is a great example of the grassroots support we have from across the country to do so. Arms and legs are not luxury items. Mobility is a serious issue for amputees who want to keep their jobs, take care of their families, and live healthy, active lives.”
Amputees and their families are making the trip to Washington, D.C., to tell lawmakers that they need their own “bailout.” While the U.S. Department of Veterans Affairs, the Department of Defense, Workers' Compensation insurance,
Medicare, Medicaid, the State Children's Health Insurance Program (SCHIP), and even Congress' health insurance plan cover prosthetic and orthotic devices, a growing number of group and private insurance companies cap the benefit so low that the average working family can't afford adequate prosthetic care.

“Although an average adult amputee needs a replacement prosthesis every five years and children even more frequently,” Calhoun said, “some insurance companies are providing coverage for only one prosthesis per lifetime or eliminating coverage completely.”

Such practices pose especially grave challenges for families of children with limb loss. Take Evan Light, for example. At 8, he is already on his fifth pair of prosthetic legs, and the last pair alone cost more than $20,000. Until the legislature in his home state of Indiana took action, his prosthetics benefit under the family's insurance plan was only $4,000.

“Families like Evan's are essentially penalized $20,000 or more because their child has grown and their arm or leg no longer fits,” said Calhoun. “Even for older adults, it is absurd to expect them to use only one prosthesis in their lifetime. No one would expect a person to wear a single pair of shoes their entire life, and prosthetic devices should be no different.”

“The legislation we are seeking support for would ensure that children like Evan have access to arms and legs that keep them active and productive at home and at school,” says Evan's father, Randy, who plans to attend Lobby Day with his son to support the legislation.

Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA) and Representatives Robert Andrews (D-NJ) and George Miller (D-CA) are key sponsors of the bill, called the Prosthetic and Orthotic Parity Act. This bill would require employer-paid health plans to provide coverage for prosthetic and custom-fabricated orthotic devices on par with the coverage offered for medical and surgical services.

“People pay their monthly health insurance premiums and expect their coverage to take care of catastrophic situations like losing a limb,” said Calhoun. “This is the very reason people purchase health insurance. No American deserves to be forced to continue using a device that no longer fits or is broken.”

Statistics compiled by the Amputee Coalition indicate that passing legislation that ensures fair coverage for prosthetic devices will return people to work and ensure that there is no cost-shifting to government programs for coverage. Data also indicates that the proposed legislation would cost less than 60 cents per member per month in insurance premiums.

Currently, 11 states – Colorado, Maine, New Hampshire, Rhode Island,
Massachusetts, California, Oregon, New Jersey, Indiana, Vermont and Louisiana – have passed laws that ensure fair coverage for prosthetics, and more than 30 states have legislation in various stages in their state capitols.

“These state laws have helped many people, but they are not enough,” said Morgan Sheets, the Amputee Coalition's national advocacy director, who is leading the Lobby Day activities. “Without a federal law, there will always be amputees who fall through the cracks.”

Lorenzo Smith, whose right leg was amputated when he was 12, did just that. His mother, Albertha Jackson-Smith, vividly recalls the tragic day she had to explain to her young son that he couldn't have an artificial leg because the family's insurance wouldn't cover it.

“We are fighting for people like Lorenzo Smith, Evan Light, and even for those people who are not aware of their lack of coverage, but it's a difficult battle,” said Sheets. “Insurance companies have a powerful voice. The Amputee Coalition and its citizen lobbyists are like David taking on Goliath. However, we trust that our congressional representatives will see the logic in our claims and do what is right. This year, they will have a wonderful opportunity to help us achieve a great victory for American families.”

Exhibit aims to educate about Down syndrome through beautiful photos of children

From the Pioneer Local outside of Chicago:

One day, Nancy Gianni was called into her daughter's preschool by the principal and a social worker to discuss how uncomfortable GiGi was making the parents of other students.

GiGi has Down syndrome.

"They said she had done nothing wrong," Gianni said. "She simply wears her diagnosis on her face and that was enough for these parents to be concerned."

She added, "I remember sitting there as if I had just been stabbed in the heart."

Down syndrome is the result of an extra chromosome, which often causes mental retardation.

The severity can vary.

What these parents were failing to see was the social, smart and independent child GiGi actually is. She got along with others, could already spell some words and didn't need any help in the bathroom. But, Gianni, who lives in Barrington, realized it wasn't just these parents who failed to see beyond the physical signs of a genetic disorder.

So Gianni, founder of GiGi's Playhouse, an awareness center for children with Down syndrome and their parents, teamed up with Barrington photographer Thomas Balsamo to create a traveling exhibit of black and white portraits of individuals with Down syndrome. All subjects were photographed from the chest up.

The exhibit, "i have a voice," will be on display at the Ela Area Public Library in Lake Zurich March 1-30.

"I love the pictures," Gianni said, "because it shows that there is so much more to our kids than just their diagnosis."

Balsamo had previously published a book of photographs called Souls: Beneath and Beyond Autism, which won the Autism Society of America's 2003 Literary Work of the Year. The photos, he said, give a voice to a segment of the population that is usually misunderstood by the public.

"These individuals do have something valuable to say," he said. "They have a challenge. They try to fit into a public that doesn't understand them so well."

He concentrated on closely cropped shots of their faces, an area that tells the most about somebody, particularly the eyes.

"I strive to capture a glimpse of the soul through the eyes," he said. "I felt I was able to capture the essence of who they were."

That is exactly what the title of the exhibit, all in lower-case letters, wants people to know.

"The small 'i' represents the children in the exhibit," Gianni said. "They are quietly trying to tell you, 'Get to know me, I am important.'"

The library is perfect for the exhibit, said Christy Wagner, Ela Area Public Library outreach coordinator, because part of the library's responsibility is to educate the community, which turned out by the thousands to visit the Anne Frank exhibit last year.

"It's the perfect venue for exposing people to the beauty of this exhibit," she said.

First amputee accepted into U.S. Army Warrant Officer School

From American Forces Press Service:

WASHINGTON – The U.S. Army Warrant Officer School soon will welcome a new accession of warrant officers this spring, and one will bring with him a new perspective to the Army officer corps.

Staff Sgt. Johnathan Holsey (pictured) became the first amputee accepted by the Warrant Officer School in Fort Rucker, Ala., where he is to report in April. He is currently assigned to Human Resources Command in Alexandria, Va.

Along with other wounded warriors, he’s scheduled to be a guest on the Feb. 26 "Oprah Winfrey Show.”

Holsey was injured Nov. 11, 2004, in Iraq where he was assigned to the 1st Battalion of the 503rd Infantry Regiment. A roadside bomb caused severe damage to his left leg. Two weeks after arriving at Walter Reed Army Medical Center here, and one day before Thanksgiving, the doctors told Holsey they needed to remove his leg due to severe infection.

“I remember the day when the doctor came in,” he recalled. “I remember the doctor coming in on the 22nd of November and … he told me that it was best that we amputate, but it was [my] choice.”

Holsey said losing his leg was particularly challenging for him and his children. But through faith and family support, he was able to persevere and come through stronger and more focused.

“Family is very important to the recovery process,” he added.

Hosey has thought a lot about his recovery and how he can continue to meet the challenges of being an amputee. “I’m blessed in my recovery, and I try to challenge myself to figure it out,” he said. “Even though you might have lost your leg it doesn’t mean you can’t do … things. You just have to figure out how to balance it or figure out how to do it.”

Nearly five months after his injury, Holsey was fitted for his first prosthetic leg. He learned how to manage without a leg by participating in some of the hospital’s coordinated activities, such as skiing and fishing.

“You have all these questions … things you probably never thought of,” he said. “Before I became an amputee, I can honestly say I never met one and
probably never knew [one].”

Since his injury, Holsey has continued facing challenges head-on, never shying away from them, while seamlessly pursuing his desire to serve his country.

“I have always liked being in front,” Holsey said. “I never accepted things as being mediocre.”

In March 2006, soon after completing his rehabilitation at Walter Reed, Holsey attended the Basic Noncommissioned Officer Course, or BNCOC. His journey to become the first amputee accepted to Warrant Officer School was materializing.

“It was an interesting thing for me, because I was one of the first [human resources] soldiers to go as an amputee,” Holsey said. “I felt that even though I wanted to stay -- I wanted to be a soldier regardless -- this is what we do. I wanted to go the next rank and knew this was something I had to do.”

Holsey said that BNCOC was interesting for him and the trainers, who initially questioned whether he would complete his annual physical fitness test.

BNCOC, for me, was pretty interesting,” he said. “They were like, ‘You are an amputee. How do we give you your PT test?’” Holsey wanted to participate in physical training and sought guidance from his immediate supervisors so he could perform his annual test.

Holsey said he remains on active duty in part because of the people he has met throughout his career. In fact, he said, one soldier he mentored contacted him many years later just to thank him for his leadership.

“He said, ‘Thank you for being there throughout all of the things that I put you through’ and ‘You were still my sergeant, no matter what,’” Holsey said. “I think that was one of the most memorable things that … made me realize this is why I want to stay around.’”

Canadian researchers developing medications for learning disabilities

From Additude Magazine:

Toronto researchers are developing a medication that may one day help people with inherited learning disorders. According to a study released from Toronto's Hospital for Sick Children, published online in PLoS Biology, the way to treat learning disorders in the future may be via pills, not behavioral and learning techniques.

With learning disorders, the brain cells needed for learning are all present, says lead researcher Rod McInnes. "What's lacking is all the machinery that's required for normal communication between the neurons," he says.

In a study of mice, the researchers looked at the neural protein Neto1, which plays a crucial role in brain connections, and is responsible for the ability to recall where things are in your surroundings. The mice that had their ability to produce Neto1 removed were unable to find a hidden object in a maze, but when they were given a drug now being tested on Alzheimer's patients, they were able to locate the object.

The drug is still being tested, and it will be several years before it would be ready for use. Many learning disorder groups are optimistic about the possibilities, but some are concerned about treating learning disabilities as medical conditions in need of a cure.

“Many learning disabilities are not medical conditions, in my opinion,” said Sue Hall, founder of The Whole Dyslexic Society. “A learning disability such as dyslexia arises because of a particular way of learning.”

Drug trial shows promise for treating MS symptom

From The New York Times:

A drug developed by Acorda Therapeutics improved the walking ability of some people with multiple sclerosis in a clinical trial, doctors reported Feb. 26. The results could lead to approval of the first drug to treat a specific symptom of the disease.

“This is the first thing that has ever been able to improve the impairment to some degree,” said Dr. Andrew D. Goodman, the lead author of the study, which is being published in The Lancet, a medical journal.

Acorda applied last month for regulatory approval for the drug, called
fampridine, based in part on data from this study. The 14-year-old company, based in Hawthorne, N.Y., already sells one drug, a treatment for spasticity, but it is not yet profitable.

In MS, the immune system attacks the insulation around nerve fibers. That interferes with transmission of signals through the nerves, causing a variety of neurological problems. For many patients difficulty walking is one of the most vexing problems.

The existing drugs for multiple sclerosis are thought to work through the immune system to reduce relapses and slow the development of problems. Acorda’s fampridine, by contrast, improves the ability of the nerve fibers to transmit signals.

It could be used along with other medicines to improve walking in people who already have that disability, said Dr. Goodman, a professor of neurology at the University of Rochester and a consultant to Acorda, which sponsored the trial.

In the trial, which involved 301 patients, 35 percent of those who got the drug walked faster over the 14-week trial period than they had before, compared with 8 percent of those getting a placebo.

Even those who responded to the drug, however, remained disabled. The average speed at which they could walk 25 feet rose from 2 feet a second to 2.5 feet a second. A healthy person can walk about 6 feet a second, Dr. Goodman said.

Still, the patients reported in questionnaires that they could sense the improvement in their ability to do such things as walk outside, climb stairs or stand in one place for a prolonged period. Some other experts were less certain. In a commentary also published in The Lancet, two European experts said that more information was needed to figure out which patients would benefit from the drug.

Nicholas LaRocca, a vice president of the National Multiple Sclerosis Society, said in an interview that he welcomed the drug but added, “It’s a little hard to tell what the overall clinical impact will be.”

There have been signs since the 1980s that fampridine, also known as 4-aminopyridine, could help people with MS. But it also caused dangerous seizures.

Acorda’s formulation, taken as a pill twice a day, releases the drug gradually into the bloodstream, preventing buildup of dangerous concentrations. Acorda licensed worldwide marketing rights for this formulation, which it calls fampridine-SR, for sustained release, from Elan, the Irish drug firm. In the trial, only one person suffered a seizure.

Dr. Ron Cohen, Acorda’s chief executive, said fampridine, if approved, would sell for about $5,000 to $10,000 a year. An estimated 400,000 Americans have MS, and more than half of them have some difficulty walking, according to a poll sponsored by Acorda and the MS society.

Bloomberg News reported this week that Biogen Idec, which sells the MS drugs Avonex and Tysabri, was in talks to buy Acorda or the marketing rights for fampridine. Neither company would comment.

Some of the data in The Lancet paper had been previously announced by the company. Shares of Acorda fell 37 cents, to $23.82 Thursday.

Thursday, February 26, 2009

Georgia arrests four members of assisted suicide network

From the Atlanta Journal-Constitution:

The death had been planned for months, authorities say. Two helium tanks were purchased, along with an “exit bag,” or hood to be placed over the suicidal man’s head.

Thomas “Ted” Goodwin, 63, formerly of Kennesaw, and Claire Blehr, 76, of Atlanta, would observe the death of the man they were told suffered from pancreatic cancer. In truth, the man was a Georgia Bureau of Investigation agent conducting a sting operation at a residence in Dawson County.

On Feb. 25, authorities say, Goodwin walked the undercover agent through the steps that would have killed him. He demonstrated how he would hold down the undercover agent’s hands to prohibit him from removing the “exit bag.”

At that point, other agents moved in and arrested Goodwin, said GBI spokesman John Bankhead. He, Blehr and two men in Maryland were taken into custody on charges they helped John Celmer, 58, of Cumming, commit suicide by the same method last June.

Celmer’s family found his death to be suspicious. They contacted the Cumming Police Department, which led to the GBI’s involvement.

Bankhead said agents found evidence in Celmer’s house linking him to the Final Exit Network, a Marietta-based volunteer organization —- of which Goodwin is president —- supposedly dedicated to serving individuals who are suffering from an incurable illness or intolerable pain.

Blehr was one of those volunteers, Bankhead said. She wasn’t present when Goodwin was arrested; she was apprehended after being in a minor car accident en route to Dawson County. Bankhead said the woman was with John Celmer the day he died.

Blehr and Goodwin were charged with assisted suicide, tampering with evidence and a violation of Georgia’s RICO (Racketeer Influenced and Corrupt Organizations) Act. Officials said these were the first arrests they knew of for assisting a suicide in Georgia.

According to the Georgia criminal code, “‘intentionally and actively assisting suicide’ means direct and physical involvement, intervention, or participation in the act of suicide which is carried out free of any threat, force, duress, or deception and with understanding of the consequences of such conduct.”

The maximum penalties facing the defendants are five years in prison for assisting a suicide, three years for tampering with evidence and a possible 20 years for the RICO violations.

In Maryland, authorities arrested Dr. Lawrence D. Egbert, 81, and Nicholas Alec Sheridan, 60, both of Baltimore.

Jerry Dincin, a retired clinical psychologist and vice president of Final Exit, said in a telephone interview Wednesday night that volunteers do not assist in suicides.

“We observe. We hold hands. We offer psychological support,” he said. “We are very passive.”

The GBI alleges that the four charged were not mere observers, but participants in Celmer’s death.

The Cumming man was not terminally ill, Bankhead said. “He had had cancer of the jaw, but that was under control,” the GBI spokesman said.

John Lemac, who lived two doors down from Celmer, said his neighbor did not seem preoccupied with death.

“He talked a lot and never once said a word about suicide,” Lemac said.

Goodwin had no trouble talking about the issue. In a February 2006 interview with The Atlanta Journal-Constitution, he talked of watching his father die after an agonizing 10-year battle with emphysema.

“That made me decide to get active,” he said. Goodwin was described as a driving force in the right-to-die movement by Derek Humphry, author of the best-selling book “Final Exit.”

In the interview, Goodwin said he had already witnessed the deaths of 12 people who had come to Final Exit looking for a way out.

“We feel there will be a prosecution based on political reasons,” he said.

“But we are willing to take that risk to do the compassionate work that needs to be done.”

Blehr’s former husband, Mike Thatcher, described the longtime Atlantan as “a gentle person, a compassionate person.”

Thatcher, who lives in Dayton, Tenn., said Blehr once volunteered with an organization that provided dogs for the elderly and very ill.

Investigators remained at her home off LaVista Road in northeast Atlanta well into the night Wednesday.

Bankhead said agents are looking for additional evidence at 16 locations in seven states.

In the Dawson County case, the GBI alleges that Final Exit did not request any confirmation of the undercover agent’s claim he had pancreatic cancer.

“They didn’t even check to see if this was his actual residence,” Bankhead said.

Dincin said he doesn’t believe his associates are guilty.

“It would have to be extremely untrue if it involves Ted,” said Dincin, who said he knew all of those charged except for Blehr.

He said Egbert is Final Exit’s medical adviser who determines whether those seeking to die meet the group’s guidelines.

“We tell them to read a book (‘Final Exit’) and we tell them that, in our experience, this is a lot better than pointing a gun and blowing your brains out,” said Dincin, who joined the group after being diagnosed with pancreatic cancer, currently in remission. “Our policies forbid any direct involvement.”

The suspects will be prosecuted in Forsyth County. Goodwin and Blehr were being held in Forsyth County jail late Wednesday night.

Alaska disability advocates press Gov. Palin, state lawmakers for support


JUNEAU, Alaska -- When the Key Coalition comes to town, children with special needs fill the Capitol hallway, along with people in wheelchairs and with seeing-eye dogs.

The coalition goes to Juneau every year to raise awareness about people with disabilities and to improve services. They're hard to miss, yet their friends and family say they seem to miss out on a lot.

Advocates for people with developmental disabilities feel they have a hard time getting heard, but since the governor gave birth to Trig, her child with Down Syndrome, a lot has changed.

In her State of the State speech, Gov. Sarah Palin promised more support for children with special needs, such as giving more money to screen children with autism.

Those at a rally Wednesday worry that lawmakers don't understand what's
at stake. Hundreds of people with development disabilities are on waiting lists for services.

One child, Jonah, was born with brain damage on the left side of his brain, but he got the services he needed.

"He's living proof, because he wasn't walking, he wasn't talking and because he's had over two years of services, he's much more independent," Jonah's mother Kamah Gregory said.

But with so many children on the waiting list, other kids may not fare so well.

"All we're asking you for is one word, and that's 'justice,'" disability service advocate Steve Leshko said. "Remember the old saying that 'Justice isn't something you go out and shop for or something you find, it's something you create.'"

Advocates are also asking for more support for home services for the elderly and developmentally disabled so it can keep them out of costly institutions.

But even with the governor's support they know that the dollars will be tough to come by, and their battle is far from over.

One of the bills the Key Coalition supports is sponsored by Sen. Johnny Ellis, D-Anchorage, that would require the state to review Medicaid rates for services provided at home for the elderly and the disabled.

Nursing homes and other facilities get rate adjustments, but rates for services provided at home do not, so a lot of therapists and people trained to work with the disabled end up leaving the state.

Ellis said it would be a good investment for the state, because as the population ages, more people are going to need at-home services, which are cheaper to provide than building a new nursing home.

New Zealand nature site becomes wheelchair accessible

From the Gisborne Herald in New Zealand:

The first part of a major upgrade at Gray's Bush has been completed, and wheelchair users have already put it to the test and given it the thumbs-up.

The first part of the Gray's Bush makeover has involved putting down a special surface to allow wheelchair users to get in among the trees and enjoy the bush surroundings.

One of the loop tracks starting at the entrance to the bush reserve - 10 minutes from Gisborne on Back Ormond Road - has a new, firm surface created by first laying a protective honeycomb matting over the original soil surface, to protect the surface and sub-surface network of tree roots.

A special mix of limestone, gravel and cement has been laid over the matting to give the firmness required for wheelchairs.

The path structure "floats" over the floor of the reserve so no vegetation is damaged by visitors using the track.

Conservation officer Jamie Quirk says it looks a bit stark at the moment, but within a year the path will have weathered and blended into its surroundings as leaf matter and dirt settle on its edges and surface.

"What is pleasing is we've already had good feedback from several wheelchair users who have visited Gray's Bush and gone for a spin on the track."They're rapt and say it's great to be able to get into the reserve and enjoy nature."

Mr Quirk says one of the aims is to allow vegetation to hang over the track and give the wheelchair visitors the chance to experience the touch and feel of the bush plants.

Catholic parish starts religious education for young people with autism

From The AP. In the picture, Joshua Germain, 12, reads the "Our Father" during prayer time at the end of classes geared toward children with autism at St. Peters Church in Warwick, R.I.

WARWICK, R.I. — Two autistic boys sat inside a parochial school classroom this month. In a setting stripped of unnecessary furniture and toys to avoid distraction, they studied pictograms of a bearded Jesus in a red sash and images of their family members and people helping each other.

"P.J. helps — P.J. can help who?" Jennifer Aldrich, a volunteer teacher, asked 7-year-old P.J. Letizia Jr.

"Daddy and mommy," he said.

"Yeah," Aldrich said, "and when P.J. helps daddy and mommy he can be ..."

"Like Jesus," he said.

The program at St. Peter's Roman Catholic Church is among a handful of programs at Catholic churches exclusively for autistic children and the first in Rhode Island. It is part of a broader effort by dioceses to accommodate children with a wide range of developmental disorders or handicaps.

Dioceses in at least 31 states offer specialized religious instruction for students suffering from conditions including autism, mental retardation, emotional and learning disabilities and brain injuries, according to a 2007-2008 survey by the U.S. Conference of Catholic Bishops.

"To not find ways of welcoming all the people whose families want them to be part of the church community, would be not really living out our faith, I think," said Marie Powell, executive director of the conference's Secretariat of Catholic Education.

Religious groups have long offered classes to instruct the young in their faith but some have struggled to include and teach the autistic, who can have difficulty communicating and extremely short attention spans. In one high-profile case last year, a Catholic priest in Minnesota sought a restraining order against an autistic teenager who allegedly caused distractions by wetting himself and allegedly assaulted a child during Mass.

The program at St. Peter's offers a nurturing and inclusive classroom setting every two weeks for children with special needs. It also helps students practice their religion by preparing them to participate in the sacraments, or ritual acts, that normally serve as milestones on the journey to young adulthood for Catholics.

Those sacraments include confessing sins to a priest and seeking absolution, receiving the Eucharist, or bread and wine that Catholics believe is changed into the body and blood of Jesus Christ, and being publicly confirmed into the church by a bishop.

"The whole point is Jesus is totally inclusive," said the Rev. Roger Gagne, the pastor of St. Peter's who celebrated Mass for the students and their families by condensing an hour-long liturgy to about 15 minutes, skipping the music, optional prayers and making a very brief homily. "He directs his followers to do the same."

Margaret Andreozzi, the faith coordinator for elementary students at St. Peter's, said she first realized that autistic children were being left behind when she saw the siblings of an autistic child receive their sacraments while their autistic brother did not.

Other families with autistic children were wary of taking them to weekly Mass because they sometimes cry out, have verbal tics or difficulty being in large crowds.

"People are feeling that they're being cut off from the church," Andreozzi said.

Not an autism expert herself, Andreozzi consulted with professionals, bought a religious education curriculum designed by a mother in Massachusetts and recruited Catholic volunteers who have professional experience teaching autistic students in the secular world.

The program now serves 18 students ranging from 7 years old to 20. The classes have been adjusted in ways designed to help the autistic. For starters, Andreozzi and her volunteers remove unnecessary furniture, toys and other clutter from the classrooms that could distract children who sometimes fixate on unexpected objects.

Students move through three, highly structured 15-minute sessions meant to maximize routine and accommodate short attention spans. Classes are generally capped at two or three students.

Since some students are nonverbal or have difficulty reading, teachers use pictograms to discuss God, the Holy Spirit, the church and to help them pray the Lord's Prayer as a group. More emphasis is placed on big ideas than memorizing the Ten Commandments, church history or Bible study.

Maya Colantuono, who teaches the two oldest boys in the program, said her class requires flexibility. Sometimes her students insist on talking about clothing or their attention fades before the 15-minute session ends. She hopes to impart a few central lessons.

"It's always Jesus and God love us," she said, shortly after returning her students to their parents. "They love all people, even people who are different. And so I think particularly with autism, they are sometimes aware of their differences."

The program satisfies a void for parents, said Susan Conroy, 50. She wants her son, Gabriel, to make his first communion like her two older children. But she worried that Gabriel would have struggled in the preparatory classes offered at her home parish in neighboring Cranston.

Gabriel does not talk and would have difficulty sitting through religious education classes after attending a full school day. But she wants her son included in the church, like the rest of his family.

"My child is just as much of a child of God as my other two are," she said. "The fact that he can't talk or doesn't have 100 percent understanding of this whole religion thing, there's still no reason why he can't be blessed to have the sacraments."

Alabama agency closer to dropping MR from its name

From The Tuscaloosa News:

MONTGOMERY, Ala. -- The Department of Mental Health and Retardation wants to change its name to the Department of Mental Health.

The House Government Operations Committee complied with the request Feb. 25 and approved a bill to change the name. The legislation also would change various terms describing disabilities to newer terminology.

The bill almost passed the House and Senate last year, said sponsor Rep. Randy Davis, R-Daphne.

“One thing we’re looking at is the constitution had demeaning terminology and now we’re changing it intentionally,” Davis said. He said the term “mental retardation” has negative connotations and can be used in a derogatory way.

The bill also would change the term mentally retarded to “people with an intellectual disability.”

“Professional practice around the country has replaced the term ‘mentally retarded’ to reflect work with people with ‘intellectual disabilities’,” according to a statement from Davis.

Davis said the bill does not change or alter eligibility for any program or service. He said 43 states have changed the names of their agencies to delete older terminology.

The bill now goes to the House for consideration.

Arizona parents continue their protests of cuts to services for their disabled children

From the intro to a story in the Tucson Weekly in Arizona:

Clare Hofmann Augustine's 3-year-old son, Marsalis, has received early-childhood intervention therapies and support from the Arizona Department of Economic Security since shortly after he was born with Down syndrome.

Although those services end when a child reaches the age of 3, Hofmann Augustine joined more than 100 other families and therapists to speak out in support of Arizona's most vulnerable--children with developmental and cognitive disabilities.

He and his mother joined other parents who also have children with Down syndrome in front of Child and Family Resources, a social service agency that recently announced it was being forced to lay off 21 staff members after losing $7 million in DES funds, thanks to state budget cuts.

Hofmann Augustine said she and her friends hoped to lend a voice to the children the agency serves (including their own children) to prevent the destruction of early-childhood intervention services after $172 million was slashed from the DES budget by Republican-led state leadership.

"To me, it's like the weakest of the weak is being preyed upon. It's immoral what they've done, and it hurts my heart," Hofmann Augustine said.

In early February, DES released a list of programs affected by state budget cuts. The department had already announced it saved more than $110 million through layoffs and employee furloughs--but the department still needed to cut more.

The cuts hit early-childhood intervention services hard. Right now, 4,000 children receive in-home therapies as part of early-childhood intervention. As of March 1, according to DES, those services will be reduced or cut, as will benefits for about 20,000 low-income children and almost 5,000 children in foster care.

"It is just so wrong to cut services to these kids from 0 to 3 years old. They are just starting out and in great need. I'm not saying that early invention filled every gap, but in my life, they've made such a difference," Hofmann Augustine said.

When Marsalis was born and diagnosed with Down syndrome, Hofmann
Augustine said, she was depressed.

"These therapists are well-educated about who they are serving. It also made such a difference in my life. I was going through such a funk bringing this baby in the world ... a gamut of emotions. But in early intervention, I just got so much support. It turned things around for me," Hofmann Augustine said. "They were there, caring for him, and it helped me understand he's a valid human being, and he has so much potential."

Marsalis, like many children with Down syndrome, was born with a heart defect and had to have heart surgery when he was 4 months old. Another focus on his care in early intervention has been in-home speech therapy; without it, Hofmann Augustine said, transitioning him into preschool in the Marana Unified School District would have been difficult.

While Hofmann Augustine and her friends stood outside, Democratic state Sens. Paul Aboud and Linda Lopez addressed media, family and providers inside a packed Child and Family Resources conference room.

Death of British political leader's young son brings attention to CP, epilepsy

From The Daily Mail in the UK. Ivan Cameron, 6, who died Feb. 25, was the son of British Tory party leader David Cameron.

Although he seemed healthy at birth, Ivan's parents knew within days that something was wrong. (Ivan is pictured with his father.)

Doctors soon gave the Camerons a distressing prognosis - their little boy was not expected to survive beyond his third birthday.

He was severely disabled by both cerebral palsy and epilepsy.

The combination of these conditions is quite common, but in Ivan's case it was even more serious because he also had Ohtahara syndrome.

This is an extremely rare complication of epilepsy, affecting just one in 500 sufferers, and boys more than girls.

It is caused by an underlying structural brain abnormality which might have a genetic origin or, more likely, is the result of brain damage before or around the time of birth.

It is rarely an inherited disorder and it is thought only four families in the world have two affected children.

Seizures start before the baby is three months old. Most die before the age of three, often due to chest infections or pneumonia.

A phenomenon known as sudden unexplained death in epilepsy is also a constant

Babies with Ohtahara syndrome - which was first described in medical textbooks only 30 years ago - are often very floppy, excessively sleepy and over time develop stiffness in their limbs.

Medication has limited effect and the children make little developmental progress, being totally dependent on others.

They often feed poorly and their sleep is punctuated by seizures and muscle spasms - between ten and 300 every 24 hours, which make round-the-clock care a necessity. Some people with cerebral palsy suffer only minor problems but, as in Ivan's case, others have severe disabilities.

Depending on which part of the brain is damaged, the cerebral palsy can lead to problems with sight, hearing, perception and learning difficulties.

There are three types of cerebral palsy: spastic, dyskinetic and ataxic and generally relate to which part of the brain has been affected.

Treatments to reduce the impact of the condition include physiotherapy, occupational therapy, and speech therapy - much provided by Scope, the charity once known as the Spastics Society. Surgery can correct severe deformities and medication can remove muscle spasms.

No two cases of cerebral palsy are the same - with the condition ranging from minor walking problems to severe disabilities.

Ivan was unable to walk or talk. He was fed drugs and liquid food through a tube in his abdomen and required 24-hour care.

All the different types of epilepsy affect more than 450,000 people in the UK.
Epilepsy in general is defined by having recurrent seizures (sometimes called fits).

A seizure is caused by a sudden burst of excess electrical activity in the brain, which causes disruption to the way messages pass along the body's systems.

The number and type of seizures will vary from person to person and there are many different associated syndromes.

Scientists know about 40 different types of seizure alone and a person may have more than one type.

Sometimes the reasons for epilepsy are known - such as brain damage suffered during a difficult birth or a stroke which starves the brain of oxygen.

However, most people with the condition (60 per cent) will not know the reason behind their epilepsy.

There is no current cure for epilepsy but medication can help control seizures and allow people to live as normal a life as possible.

Emoti-chair allows for music to be heard with the body, concert for deaf community scheduled

From the National Post in Canada:

In a small Toronto tavern next week, people who cannot hear will crowd into the room to experience music.

The unusual concert, in what organizers say is the first ever concert for the deaf, is a rather public experiment by those who specialize in the science of music, who will use computers to translate audio signals into tactile sensations, along with visual projections that mimic the tempo of the music.

The science is said to help deaf people experience music so vividly that some can distinguish between genres of music or even individual instruments.

"I can tell the difference between jazz and classical music," said Ellen Hibbard, a deaf individual and a PhD student in Communications and Culture at Ryerson. "I've started to like blues for when I want something more mellow than jazz.... I now can recognize if there are vocals in the music."

What allows her to experience music is a unique development invented by a team of researchers from Ryerson University's Centre for Learning Technologies and the Science of Music, Auditory Research and Technology (SMART) Lab.

Deaf people who listen to music using the lab's Emoti-Chair will often experience a physiological response similar to those who can hear it, said Dr. Frank Russo, director of the SMART lab and co-inventor.

The chair is equipped with 16 vibrating motors known as voice coils, spread across the body of the chair. Music is inputted into the chair and undergoes what is known as a Fourier transformation, where the sound is broken down according to its different frequencies. Those frequencies are then channelled to the voice coils to be picked up by the user's back. Higher frequencies activate voice coils at the top of the chair, and lower frequencies activate coils at the bottom end of the chair.

"Basically what we're doing is we're treating the back as the basilar membrane of the inner ear," said Dr. Russo, who has been studying the effect of music on humans for 15 years. "We're taking the output from that Fourier transformation and displaying it across the back."

He said the technology is designed to be a metaphor for turning the human body into a cochlea, the main organ responsible for hearing, replicating its ability to separate music into multiple, discrete packets of audio signals presented to the body as vibrations.

Deaf people already know that the appeal of music goes beyond the auditory, Dr. Russo said, as they will often go to clubs and place their bodies against a speaker box to indulge in a vibratory experience of what they cannot hear. But with that form of speaker listening, the true nature of the music is often obscured as lower frequencies tend to drown out higher ones, he said.

In order to tell the difference between the sound of one instrument and another, you need to have a sense of the full spectrum, not just the low end. The technology behind the Emoti-Chair allows users to experience a reproduction of all the frequencies, so that their bodies can actually feel the highs and the lows.

Dr. Robert Zatorre, a professor of neuroscience at the Montreal Neurological Hospital and Institute, said although about 99% of a hearing person's appreciation of music stems from the audio input, the brains of deaf people will rewire over time to enable them to decipher audio cues through their other senses.

When a deaf person receives vibratory input from the skin, it gets converted into something akin to sound, he said.

Brain-imaging techniques show that when a hearing person experiences a vibration on their fingertips, the part of their brain related to the fingers will light up, he said. If that same stimulus is applied to a deaf person, however, the part of their brain that normally responds to sound lights up, although Dr. Zatorre is hesitant to equate that sensation with hearing, because the inner membrane of the ear is vastly more sensitive than skin.

Still, he said the potential for the brain to improve and reorganize its method of sensory perception is vast.

The concert, which is to be held on March 5 at Clinton's Tavern, will rely on the combined effect of seeing performers on stage, along with the detailed vibration of the Emoti-Chairs and a series of visual projections to allow local bandssuch as the Fox Jaws, Hollywood Swank, and Treestar to perform.

Those who can hear, however, may find the concert exceptionally loud as it caters to those with limited hearing. Free earplugs are to be handed out at the door.

Parents rally against closure of special ed center in southern California

From the San Fernando Valley Sun:

At the age of three, Natalie Ceja barely spoke 35 words.

It wasn't the first time her mother, Lupe Ramirez of Sylmar, (pictured) struggled with a child. Her five-year-old daughter Maria Luisa has Down Syndrome and she knew how important it was to get the appropriate help for her children.

And looking at the progress her older child had made at West Valley Special Education Center in Van Nuys, Ramirez sought to place her younger daughter there. It wasn't easy.

"They (school district) refused to give me information about the school, even though I already had a child there. They didn't even want to put me on the waiting list," said Ramirez. "They wanted to put her in the school of their choice."

This, apparently, because the Los Angeles Unified School District is considering closing the Center at the end of the school year. All 144 students, 60-70% of which are children of special needs, would be transferred to other similar schools.

Parents vehemently oppose this idea, citing the security and expertise the school has displayed for nearly four decades. On Monday night, hundreds of parents packed the school's auditorium, even spilling outside where a screen was placed so the parents could follow the actions inside. Ramirez also said the change would be difficult and damaging to her children.

"It is very difficult for them (children with special needs) to adapt to something new. I'm afraid they will lose all of their progress. It's starting anew", she said Monday night during a meeting at the school packed with angry parents and attended by LAUSD officials, including superintendent Ramon Cortines.

"In one month, she (Natali) is speaking 60 words. They have really good specialists here in the school," said Ramirez. Those are the same arguments of Carolee Nickel, mother of 9-year-old Kaylee, who also has Down Syndrome.

In a tearful plea before Cortines, Nickel said she had not chosen the center for being the closest school to her home, but "because it offers the best education possible".

She also charged that parents had not been made aware of decisions regarding the future of the school and that if the closure of the school is a result of budget problems at the LAUSD "let them start [the cuts] downtown and not at this wonderful school site".

According to Jean Brown,District 1 superintendent, the possible closure of the school is a result of the drop in the number of students there.

However, she emphasized that there are five other special education centers in District 1 and one in district 2. At least three of them are in nearby Encino and Reseda.

"It is not the intent of this district to close special education centers.

We recognize the need for special education center.We're simply concerned with the drop in attendance at the school," she said.

However, parents and teachers contend that the drop in attendance is a result of LAUSD tactics over the past year.

"They (LAUSD)manipulated our numbers by telling parents there were no openings. They didn't even offer the school to the parents, but they're sending students to other special education centers", said Hector Martinez, who teachers students with Down Syndrome and autism from kinder to third grade.

"We have not been allowed to open new classes, while other schools can," he said. "All we want is a fair chance like other schools.

I'm very frustrated that our parents were being lied to and we're not taking it lying down," said Martinez.

It's the same argument made by Roberta Mann, lead teacher at the school.

"A school like West Valley can not be duplicated. We ask you to support us and keep our doors open," she pleaded.

Parents Julio and Susana Reina from North Hills also hope the school remains open.

Both of their children, 6-year-old Julio Jr. and three-year-old Joshua, have Down Syndrome, attend the school, which they consider very safe and with the right specialists.

"To me this is unfair. This is a very good school, one of the best," said Julio. "There are no other schools with these amenities. Here, the children don't have to leave the building to go to the cafeteria or from one classroom to another.

They don't have to cross paths or streets. They're not exposed to dangers."

"The people who teach here are experts and the children learn a lot and feel safe. They treat them as normal children", said Susana, who accused the LAUSD of "playing dirty" by keeping the possible closure hidden from the parents until the very end.

Cortines, after hearing passionate speeches from the parents, said he would take the information into consideration when making his final decision.

However, he said "I will not be part of a child being denied access to a school", when referring to the LAUSD's refusal to let parents know about the school when referring them to special education centers.

He said he visited the school recently and saw "happy children", but warned that consolidation of schools is "happening all over the school district" as a result of reduction in state funds.

"It is not about how good a school is. It is about some of the difficult decisions we have to make," said Cortines. "I have listened to the speakers and I will take that into consideration. I think I understand your love for the school."

"This district is no longer able to have many small schools as before", he added.

But parents say the solution to that is simply to offer the school to other parents with special needs children. "Offer the school and enrollment will grow," said parent Steve Rosen.