Aging disabled veterans in Florida struggle to get by

From the Gainesville Times:

LULA, Fla. — Miguel O’Casio (pictured) seemed to be doing fine.

Nearly 20 years had passed since his Vietnam War experience, since he had been flown in and out of battle-scarred areas, questioning the captured enemy in his job as an interrogator with the Marine Corps.

He was married, had a home and was working as a logistics engineer.

Then, life unraveled.

“Something stupid happened, which I can’t account for — I don’t know why or how come. But I left my wife and kids ... and went to sleep in the streets of Atlanta for three years,” O’Casio said.

Today, O’Casio faces a host of problems.

Like so many war veterans, he suffers from post-traumatic stress disorder, or PTSD, which has rendered him unable to work. Under the weight of much medication, he struggles to steady himself on his feet as he walks across the living room of his trailer.

Members of a couple of organizations, Disabled American Veterans and the Northeast Georgia chapter of Vietnam Veterans of America, have helped O’Casio with some repairs at his home, where the floors are sinking or rotting out altogether.

But his daily needs are still great, as are those of other aging Vietnam veterans. Many have seen their finances wrecked by years of dealing with sickness stemming from PTSD or diseases believed caused by Agent Orange, the herbicides used to removed vegetative cover for enemy forces.

“We are in need of contributions to help other (veterans),” said Wendy Paradis, commander of the Gainesville-Hall County chapter of Disabled American Veterans. “They are in so much need right now, with the economy and all.”

The economy also has hammered nonprofit groups trying to reel in money to help needy people.

And for now, the needs outweigh financial resources.

“The stories are so touching, you just don’t know,” she said, choking up. “It’s been a horrible year for these veterans.”

Paradis speaks of another veteran, a fellow Marine, who has been trying to help O’Casio and is himself “in the red all over the place,” and another veteran devastated after losing his business.

A veteran who had planned to meet at O’Casio’s home to share his story ended up spending the night at Northeast Georgia Medical Center, where he was being treated for problems stemming from high blood pressure.

“He lost his home recently. He doesn’t have any money,” Paradis said. “We have paid one of his car payments and a little toward another car payment to help him keep his car. He’s trying to get benefits, but it takes so long (to get them).”

She believes the government needs to make disabled veterans the highest priority.

“They fought for our country, for freedom, and to me, they should be taken care of before anybody else,” Paradis said.

The organization gets its funding strictly from donations and fundraisers.

Paradis said the Georgia Mountain Players, a Gainesville-based repertory company, has “helped us out significantly on a continuous basis,” and Home Depot “has given us a discount on helping with the cabinets we are going to install.”

Still, “we need more supporters,” she added.

The groups receives about $2,000 in donations.

The organization also helps veterans with paperwork needed to get benefits.


Unemployed veterans “do not need to be disabled to qualify for free medical at the VA hospital,” Paradis said. “They also have a hardship program to help veterans pay past medical bills.”

O’Casio, who served in the Marines from 1959-65, said he rarely leaves his trailer, except to take trips to receive medical care.

In the meantime, he has struggled to keep up his home hidden by woods off Dawn Ridge Road.

“The washer and dryer leaked profusely,” Paradis said. “It was so bad they had to bucket water into it to get it to run.”

A South Hall woman whose husband and son are training for deployment to Afghanistan replaced the appliances with a used set.

And Paradis and a group of other Vietnam vets have worked around O’Casio’s home, cleaning up his backyard and picking up flooring that had turned into chunks of sawdust.

“We have enough money to try to finish the floors and hopefully redo some cabinets, but we don’t have enough money to do to rest (of needed work) and that’s the problem,” she said.

O’Casio didn’t always struggles as he does now.

“I had a fairly good life. I didn’t always any problems. I haven’t always lived in a trailer,” he said. “And then just overnight, about 11 years ago, poof. There I was lying in the floor and ... I wouldn’t talk to people, I wouldn’t do anything.”

Adding to his struggles is getting timely care and attention, a problem he experienced recently in trying to change his pain medication.

O’Casio said he believes delays are occurring because Veterans Affairs is “getting overcrowded.”

“There are too many guys coming back from Iraq and Afghanistan, so it makes it difficult for them just to keep up,” he said. “To get a primary doctor to see you, sometimes you have to wait three months.”

According to the Department of Veterans Affair’s Web site, President Barack Obama has pledged to retool the department so that it is “veteran-centric, results-driven and foward-looking.”

Bill Harris, president of the Northeast Georgia chapter of Vietnam Veterans of America, said his group also is working hard to help veterans.

“We just helped a guy up in Clermont who is 100 percent disabled and is on kidney dialysis,” he said. “Through lack of communications, he figured he was still eligible for VA (benefits).

“It hasn’t gotten out to all these people that no matter whether or not Social Security disables you, you’re not automatically eligible for VA benefits. ... We helped pay for his prescriptions because Medicare wasn’t kicking in until June 1.”

Many veterans are jobless and having difficult times paying their bills, Harris said.

“Some of them are too proud to ask for help,” he added. “It’s a shame. No one should be (that way) after they have sacrificed years of their life for our country, but that happens.

“That’s what we’re here for — to help them and to do as much for these guys as we can, whether they are Vietnam or Korea, Afghanistan or Iraq.”

He said prostate cancer is now “showing its face” to a lot of Vietnam vets, particularly those who served in the Navy.

“The speculation is that the Navy distilled their drinking water from the sea right off the coast of Vietnam,” said Harris, himself a Navy veteran with the disease.

He said his group “is always needing (donations) or items people can use in daily life or to make life easier for them, whether it’s wheelchairs or maintenance on their wheelchairs.”

“The economy has hit us a couple of times,” he said of the group’s efforts to raise money.

“We just a had a car show where we did fairly decent — we didn’t do tremendously well — and now we’re working with the (Veterans of Foreign Wars) on their car show,” Harris said. “We try to help out all the veterans organizations that we can.”

The Vietnam group refers veterans to the DAV for help in qualifying for benefits.

“They have people specifically trained in the paperwork,” Harris said.

Still, “whatever is needed, we’ll try to do.”

The generosity isn’t lost on Paradis.

“I’m just so impressed with the (Vietnam vets group) and how they get together and help everyone. And that’s been continuous — anytime you need their help, they’re there,” she said.

O’Casio said he believes that veterans going through hardships will continue to tough out their situations.

The one thing many don’t fear, he added, is dying.

“But since we’re so hard-headed, we don’t. We keep on going, but with a little push, you could go over the hill,” he said, cracking a half-smile.

Spanish-speaking parents face unique barriers when trying to access information about autism

From Metro West Daily News in Framingham, Mass.:

Six weeks ago, the Ortizes read in the local paper about a talk in Spanish for Latino parents of children with autism held at the library in downtown Framingham.

They were thrilled.

Since they moved to Framingham from their native Puerto Rico in 1998 looking for help for their then- 3-year-old daughter Yamilex (pictured), they have yearned to connect with other Latino parents of children with Autism Spectrum Disorders (ASD).

They were disappointed when they realized they were the only ones who attended the talk on April 5.

It has been that way for the Ortizes, they said. For the past 10 years, they are often the only Latinos in support groups for families of children with ASD. And because Yamilex's mother, Judith, 46, doesn't speak English, they don't attend support groups. Yamilex's father, Tomas, 59, learned English when he was growing up in New York City, but he, too, feels lonely.

"It's hard when you're alone," said Tomas in their Beaver Terrace Circle apartment. "You want to find other people like you to relate to them and help each other out. It'd be less hard."

Finding Latino parents of children with ASD is not easy. Mauricio Perea, a special education assistant teacher with the Framingham School District, gave the April talk to break the isolation in which they live due to language and cultural hurdles.

"They face so many barriers that it's harder for them to look for help for their children," said Perea. "One of my goals is to help them find the resources to help their children improve their lives."

Nearly 1.5 million Americans have ASD, but nobody knows how many are Latinos. Experts said that as the Latino population keeps growing, the condition may be more prevalent among them in years to come. Experts also said Latino children with autism tend to be diagnosed later than non-Hispanic children.

Advocates already report an increasing demand for information in Spanish about ASD, but if the language barrier can be overcome with Spanish pages in their Web sites and more Spanish-speaking workers, cultural barriers continue to be challenging.

"In other cultures, there is shame involved with special education needs and a stigma associated with autism, and some families are hesitant to ask for help," said Jennifer Repella, director of programs for the Maryland-based Autism Society of America. "It has to happen both ways. Organizations should be aware that the need is out there and provide information, but families need to act, call and ask for help."

In the Bay State, Massachusetts Advocates for Children has offered workshops for Latino and Haitian parents of children with autism to help them get over cultural, linguistic, and literacy barriers and make them better advocates for their children's needs in the public schools. Three years ago, the group started a project in Lawrence serving 25 Latino families, said senior project director Julia Landau. It's the right thing to do, she said.

"Latino families cannot participate the same way other families do in making decisions that will affect their children's well-being," she said. "There is a real need to provide help to Latino parents and address cultural barriers they face."

Early diagnosis and intervention is crucial to help children with ASD develop their potential and better their outcomes. In Yamilex's case, her parents didn't wait long. After Yamilex turned 2, they noticed she wasn't talking, making eye contact or showing interest in other children. They took her to several doctors in Puerto Rico, who couldn't diagnose her condition. In Boston, Yamilex was diagnosed with autism in her first appointment.

She was 3 1/2, and soon after that, she started receiving special education services. Navigating the school's special education system was overwhelming in the beginning, her parents said.

"It's hard when you don't know what kind of services you can get," Tomas said.

Yamilex, who just turned 14, goes to Ashland Middle School, where she attends a special education class taught by teachers from ACCEPT Education Collaborative, a group that provides special education services to 14 different school districts in the region. At home, Emily Stahl, a home-based education teacher with ACCEPT, helps Yamilex with school homework, behavior management and problem-solving skills.

"She's fantastic," said Stahl of Yamilex. "She's very smart and wants to be very independent. She's always happy, always smiling and laughing, but she seems to have difficulties managing her own behavior."

Yamilex has tantrums, a common episode among children with ASD. During her outbursts, she hits the walls with her fists or head, breaks lamps and throws computer monitors and other pieces of furniture on the floor. Other times, she hits her mother and father or bites her own hands out of frustration. Her parents had to learn to live with her tantrums, but it's not easy. Stahl is working with Yamilex on how to express her feelings.

"I used to go to work with bruises on my arms and scratches on my face," said Tomas. "My co-workers would ask me if I had an argument with my wife. They wouldn't believe me when I told them it was my daughter."

Yamilex's developmental age is 8 years old, said her dad. Her favorite pastime is lining up her 75 Barbie dolls on the floor, something she can do for hours. She loves music and dancing and can read and write, add and subtract, but her language and communication skills still lag behind.

On a recent morning, Yamilex was sitting in the living room watching television and listening to her iPod, where she has songs by Shakira, Britney Spears, Rihanna and others. From time to time, she would laugh and smile without looking at anyone in particular.

Yamilex's parents have learned to accept her. "To me, it's not a handicap," said Tomas. "It's a condition, and she's a pretty happy child. She has her own way of doing things. If I see her smiling, that makes my day and recharges my batteries."

Though they worry about the future, the Ortizes try to live in the present. Their desire to connect with other Latino parents of children with ASD is still great, not only to build friendships, but also to help other Latino children improve their lives.

"People shouldn't feel they're alone," said Judith.

In the meantime, Judith and her husband find comfort in watching their daughter's progress over the years. Yamilex showers and dresses by herself, has been toilet-trained since age 4, and can play computer games. Though she still doesn't interact with others, she makes eye contact more frequently. Judith has been relishing a recent development. In general, Yamilex doesn't like to be touched, but lately she lets her mother hug her.

"And sometimes, she hugs me and kisses me," said Judith. "And one time, she told me 'I love you.' I told her 'I love you, too."'

Report: Alarming deficiencies in mental health care in rural America

From The Independent in Grand Island, Nebraska. A full copy of the Center for Rural Affairs report can be viewed and downloaded at http://files.cfra.org/pdf/Mental-Health-Overlooked-and-Disregarded-in-Rural-America.pdf.

LYONS, Neb. — A new report from the Center for Rural Affairs released May 29 found that there were “alarming deficiencies in the mental health care system in rural America.”

The center’s report is titled “Mental Health: Overlooked and Disregarded in Rural America.”

According to Kim Preston, rural research assistant for the Center for Rural Affairs, rural Americans remain underserved in terms of mental health care providers and health insurance coverage for mental health services, despite the fact rural Americans suffer just as much from mental illness.

She said the report “further demonstrates that rural America’s economic dependence on small business and self-employment calls for health care reform that includes an affordable, meaningful public health insurance option.”

“And that any such reform should also ensure that all Americans, rural and urban, have reasonable access to quality mental health care,” Preston said.

The Center for Rural Affairs, in collaboration with Dr. Dianne Travers Gustafson of Creighton University, recently evaluated rural Americans’ access to crucial mental health care services.

Preston said this is the fourth in a series of Center for Rural Affairs reports examining crucial health care issues in rural America. Previous reports can be found on the front page of the center’s Web site (www.cfra.org).

Findings from the report include:

— Depression: Major depression rates in some rural areas significantly exceed those in urban areas. Teens and older adults in rural areas have significantly higher suicide rates than their urban counter-parts.

— Stress: Stress is associated with increased mental health disorders and rural people experience stress with cyclical farm crises, natural disasters and social isolation.

— Barriers of availability: More than 85 percent of the 1,669 federally designated mental health professional shortage areas are rural.

— Lack of accessibility: Only in rural America did the National Advisory Committee on Rural Health (1993) find entire counties with no practicing psychiatrists, psychologists or social workers.

— Social stigma: The social stigma attached to mental health problems, in combination with a general lack of anonymity in many small communities, leads some people to forego treatment.

— Lack of affordable, meaningful health insurance coverage: Rural Americans are less likely than urban Americans to have health insurance that covers mental or behavioral health services.

According to the Nebraska Department of Health and Human Services, there are approximately 71,000 adults in Nebraska who have a serious mental illness.

Mental illness, according to DHHS officials, is often misunderstood but is a common health condition that causes changes in a person’s thinking, mood and behavior.

“It’s important to remember that people can and do recover from mental illness and lead productive lives with the support of our friends in the community,” said Carol Coussons de Reyes, Office of Consumer Affairs administrator in the Department of Health and Human Services.

Friends make a difference

There are more treatments and community support systems than ever before, but recovery does not happen in isolation, said Scot Adams, director of the Division of Behavioral Health in DHHS.

He said friendship is one of the most important factors in recovery.

“My friends and family have made a difference just by understanding and assisting throughout the course of my mental illness,” Coussons de Reyes said. “You can do a lot by simply listening to someone. For example, when a friend tells you they were diagnosed with a mental illness, ask them to tell you about their experience and feelings.”

Here are some tips from DHHS on how to respond if a friend tells you he or she has a mental illness:

— Express your concern and sympathy.

— Make sure your friend understands that you honestly care. Ask for more details about how he or she is managing and really listen.

— Remind your friend that a mental illness is treatable. Find out if the friend is getting the care he or she needs and wants.

— Ask what you can do to assist. Rides to medical appointments or keeping the person company in the waiting room can ease some of the anxiety and reluctance that people feel when faced with a life-changing diagnosis.

— Be sure to include your friend in everyday plans, such as going out to eat or catching a movie. If your friend resists these overtures, reassure and re-invite without being overbearing.

“You can make a difference in your community just by being present and available to your friend who is living with a mental illness,” Coussons de Reyes said.

The new Network of Care Web site is an easy-to-use, comprehensive Web site that provides vital information about treatment resources and diagnoses, insurance, advocacy and other pertinent behavioral health Web sites. The Network of Care Web for Behavioral Health can be accessed at www.dhhs.ne.gov/networkofcare/.

Maine girl doesn't let amputation get in the way of her junior black belt

From The Sun-Journal in Lewiston, Maine:

LEWISTON, Maine - Jaedyn Gousse makes the karate moves look effortless.

Kick, kick, kick.

Turn, kick, kick.

Tumble, roll, block.

"Hi-ya!"

In the small class at Pelletiers Karate Academy, she's always the first or second to finish the routine - and finish perfectly. One of her instructors believes the 9-year-old, who recently earned her junior black belt, has the skills and talent to become a karate master.

The Auburn third-grader does it all with one foot.

"So far, people haven't really noticed because I do it so good," she said with a grin.

Jaedyn was born with fibula hemimelia, a disorder that affects the lower leg and foot. She was missing a toe and a bone in her lower left leg, and her tibia - the bone between knee and ankle - was shortened and bowed. Doctors told her parents, Jeff and Lisa Gousse, they had two options: limb lengthening or amputation.

Limb lengthening would require at least three major surgeries and a series of minor ones, plus work to correct Jaedyn's foot. She would likely spend her childhood in and out of hospitals.

But if they chose amputation, there would be no going back.

"It was an agonizing decision," Lisa Gousse said.

After meeting with specialists, the Gousses decided amputation would cause the least pain and offer the best chance of a normal life for their daughter. When Jaedyn was 10 and a half months old, doctors amputated her left foot at the ankle.

A few months later, she was walking with a prosthesis.

Years later, she decided she wanted to learn karate.

"I started dreaming about being a black belt," Jaedyn said.

Her parents always encouraged her to try activities, and they said yes to karate. Privately, Lisa Gousse asked Rich Pelletier, owner and instructor at Pelletiers Karate Academy in Lewiston, whether her missing foot would be a problem.

Pelletier had taught students with disabilities before, including one person who was blind. He had no reservations about enrolling the 7-year-old in his children's class.

"What I look at is what the kid can do when they get on the floor," he said.

Jaedyn, it turned out, could do everything. For three classes a week she ran with the other students during warm-ups, kept up during practices and perfected her katas (karate forms).

Jaedyn has done so well that she's a member of the karate school's demonstration team, a group that tours fairs, schools and other gatherings to demonstrate martial arts skills. Last month, she earned her junior black belt.

Karate is fun, Jaedyn said. "But it's kind of more work than fun because you try to get every move right."

There are few moves Jaedyn can't get right because of her foot. Her prosthesis doesn't bend at the ankle, which stops her from completing the perfect roundhouse kick. She substitutes a side kick.

Her foot doesn't limit her activities outside karate class, either. She's taken dance lessons and participated in cheering. This summer she'll attend activity summer camp, where she'll go to the beach and Funtown in Saco. Sometimes, at school or during one of her activities, someone will ask about her missing foot. The attention, she said, can be embarrassing. But she understands the curiosity.

"They've probably never encountered it before," she said.

At karate, it's rare for anyone to even notice she has a prosthesis, let alone question it.

"Maybe a new student," Pelletier said. "They'll look down. They'll look down again. It'll throw them off for a moment and then they're like, 'OK. Whatever.'"

Pelletier believes Jaedyn could rise to the highest karate level if she decides to stick with it. Jaedyn has no plans to quit.

She wants her full black belt.

Infant survives dangerous surgery to remove 2-pound tumor from his face

From CBS News:

Mothers wait nine months to see their babies for the first time. But Kimberly Robinson had to wait a little longer.

Her son, Jordan Jamal Smith (pictured), was born on March 25, with a nearly two-pound tumor obscuring his face -- he survived despite long, long odds.

Robinson and Drs. Elvire Jacques and Ramzi Younis told his story on The Early Show May 29. The physicians are from Holtz Children's Hospital in Miami, which is part of the University of Miami/Jackson Memorial Hospital.

Co-anchor Harry Smith asked Robinson why she decided to go against convention and have the baby, despite the risks.

"Just seeing him on the monitor," Robinson repliled. "He was moving, and just the connection that we had from day one, I just couldn't" terminate the pregnancy.

Jacques, a perinatologist, said Robinson wanted to do everything she could to give little Jordan Smith a chance to live.

"Even if the chance was less than 10 percent of survival," Jacques said, "I was willing to take that chance with her."

The tumor was initially thought to be an undeveloped twin, but was later identified as just a mass. The tumor started at the back of Jordan Smith's mouth, almost killing him in the womb. In the last stage of Robinson's pregnancy, Jacques said, doctors were removing a liter of fluid a week from Robinson's abdomen through amniocentesis because Jordan couldn't properly swallow.

And when Jordan was born by C-section, the tumor left him unable to breathe, so doctors -- while he was still connected to his mother -- had to insert a tube into the tumor and into his mouth to clear an airway.

"We were not sure how much of an opening and how much of a mouth or face existed in this miraculous baby," said Younis, chief of pediatric otolaryngology at University of Miami/Jackson Memorial Hospital. "I had a few minutes to take a look, identify a mouth and an opening that would leave me to maintain an airway, and give him a life."

The tumor has since been removed completely, and Robinson said seeing her baby's face for the first time was "wonderful."

"Every time I hold him, it's joy, it's nothing but pure joy. And he's just beautiful. He has the brightest eyes, and we have such a connection."

NY law that allows children to be taken away from parents with psychiatric or developmental disabilities won't be revised this legislative session

From Press Connects:

ALBANY, N.Y. - Despite pressure from advocates who want to change a law that allows children to be removed from parents with psychiatric and developmental disabilities, a bill to accomplish that won't pass this year, a key lawmaker said this week.

Proponents want lawmakers to remove "presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child" as grounds for terminating parental rights, saying it is discriminatory and based on dated perceptions about psychiatric disabilities.

The mental illness/retardation provision was added to state social services law in the mid-1970s, when treatments and medications were not as advanced and centered around recovery as they are today, said Glenn Liebman, the state Mental Health Association's CEO.

"We think this obviously is a vestige from past perceptions of mental illness that are no longer relevant in 2009," said Liebman, whose organization is one of about 25 in the Coalition Against Parental Termination Discrimination.

But the proposal is strongly opposed by the Public Welfare Association, which represents New York's 58 local social services districts. The mental illness/developmental disability grounds are used rarely and courts have found them constitutional, the association said in a memo this month. The other grounds are abandonment, permanent neglect, and severe and repeated abuse.

Assembly Mental Health Committee Chairman Peter Rivera, D-Bronx, said lawmakers plan to work with the bill's supporters and opponents on a possible compromise. But there are too many problems with it and it will not pass this legislative session, which ends in late June, he said.

Senate Mental Health Committee Chairwoman Shirley Huntley, D-Queens, the bill's Senate sponsor, is holding a roundtable discussion on it 11 a.m. Thursday at the Capitol.

There are fewer than 300 termination cases brought annually on the basis of psychiatric and developmental disabilities - less than 9 percent of all petitions - and about half those result in termination of rights, the Public Welfare Association said. There are more than 26,000 children in foster care.

The law applies to cases in the public-welfare system, not private custody cases between parents or private adoptions. It only deals with petitions to terminate rights after a child has been in foster care more than a year. Most foster children are in care because of their parents' substance abuse, the group said.

The Coalition for the Homeless believes the bill's supporters are well intentioned, but the legislation would "do far more harm than good, and would result in more, not fewer, people permanently losing custody of their children," said Shelly Nortz, deputy executive director for policy.

The drafters of the existing law were clear their goal was protecting the rights of parents with mental illnesses and retardation, not discriminating against them, while assuring that children whose parents can't safely care for them don't "languish" in the foster-care system, Nortz said.

"They (the drafters) and the courts also sought to assure that parents with serious impairments not be accused of neglect when they have no 'fault' for their inability to parent," she said.

Proponents of the bill counter that any decision to take away parents' rights should be based on behaviors, not diagnoses.

Terminating rights "completely and irrevocably severs a parent's right to custody as well as the right to ever visit, communicate with, or regain custody of her child," Legal Services of Central New York said in a memo supporting the bill.

"Disability grounds unfairly allow the (social services) agency to dispense with diligent efforts and focus on surrender or termination, rather than fulfill their obligation to keep families together," the group said.

The Center for Public Representation of Newton, Mass., said problems for many parents with psychiatric disabilities stem from poverty, unstable housing and other issues.

The law singles out disabilities over other conditions that could compromise parenting ability, such as gambling addiction, Susan Stefan of the center wrote in a letter to legislators.

The bill's supporters said some people might not disclose their disability or seek treatment for fear it could lead to losing their children.

The statute clearly does not allow removing children strictly on a diagnosis of mental illness or retardation, said Jeff Wise, CEO of the state Rehabilitation Association, which represents not-for-profit service providers for people with psychiatric and developmental disabilities.

Removing the provision would cause parents to lose protections, such as a requirement for psychiatric evaluations, said Wise, a lawyer.

"I agree with the bill's supporters that stigma is unfair," he said. "I think my legal conclusion is that by taking this language out of this particular statute, you're actually hurting the people you're trying to protect."

Medical anthropologist develops wheelchair Tai Chi

From Skin Inc.:

Studies overwhelmingly point to regular physical exercise as the crucial medicine for what ails Americans. Physicians have a hard time convincing even healthy patients to take action, but it’s a much harder sell for those with limited movement caused by physical disabilities.

They often lack the self-confidence to begin a physical fitness plan, and it’s easy to understand why. They face transportation obstacles to visit an exercise facility. If they can get to the facility, accessing the building and equipment is often difficult or impossible, and fees are often high, says Dr. Zibin Guo, (pictured) a medical anthropologist in The University of Tennessee at Chattanooga Department of Sociology, Anthropology and Geography.

He says appropriate and interesting exercise is often not available to this group.

“Physical inactivity often further deteriorates the general health condition for these individuals, and it also tends to make them more reliant on professional medical care rather than taking a proactive approach by engaging self-care, including medications to deal with their health issues,” Guo says. As a result, the cost of care, treatment, rehabilitation and reduced productivity totals a whopping $300 billion a year in the United States alone.

The University of Tennessee at Chattanooga professor has a fresh idea—wheelchair Tai Chi. Tai Chi is one of the ancient Chinese martial arts, a noncompetitive self-paced system of gentle physical exercise that Guo has adapted for wheelchair-dependent individuals in the United States and China. For his efforts, The Tennessee Higher Education Commission recently named Guo a faculty recipient of the state Love Award, recognizing his commitment to community service.

He says wheelchair Tai Chi is one of the simplest ways for people who use wheelchairs to improve their physical and mental health. His holistic approach has been embraced in China, where he was invited by the Beijing 2008 Olympic Committee and the All China Federation for People with Disabilities to conduct a wheelchair demonstration for the International Paralympics Committee one day before the opening ceremony of the 2008 Paralympics in Beijing.

Guo’s technique is benefitting people in Chattanooga, such as a 70-year-old woman who suffered a stroke seven years ago as the result of high blood pressure. Her left arm was partially paralyzed, and, throughout the years, she fell twice. She was confined to a wheelchair for more than two years and unable to walk even a short distance.

The woman decided to participate in a small study of the effects of wheelchair Tai Chi, directed by Guo with University of Tennessee at Chattanooga faculty members Dr. Nancy Fell (physical therapy) and Dr. Janet Secrest (nursing) and Dr. Glenn Haban, a neuropsychologist at Siskin Hospital for Physical Rehabilitation in Chattanooga. The study is among the first in the country to explore the potential benefits of practicing a simple seated Tai Chi program for people with ambulatory disability resulting from health problems or injuries.

Participants who qualified were unable to walk independently 50 feet or more with an assistive device in one minute or less. Six women and four men signed on for two months of free classes. They met twice a week for 45-minute Tai Chi sessions. Classes were held at the new Fitness Center at Siskin Hospital, located on the main campus in downtown Chattanooga.

At the conclusion of the classes, the woman's improvement was dramatic. She began walking and treading stairs unassisted, and she began to regain use of her left arm. With her strength and mobility vastly improved, she gives all the credit to the seated Tai Chi method.

“I made so much progress, and I’ve enjoyed it,” she says. “I’ve been inspired by what I’ve seen others doing, and it helps me. And they say what I did helped them.”

Many of the participants reported improved stamina and said they enjoyed the social nature of the classes. Though his professional reaction to the study is one of guarded optimism, Haban says Siskin Hospital for Physical Rehabilitation is committed to continuing the study.

He remains hopeful that using Tai Chi as an intervention will positively impact patients’ functional strengths.

“The minimum that could be said in this study is that it points to the need for further research to be done,” Haban says.

From a neuropsychological perspective, Haban says three factors are needed to promote health, as well as recovery following a significant illness: physical activity, mental stimulation, and social involvement.

Too often, he says, circumstances limit these factors, and patients suffer as a result.

“Tai Chi was able to intervene on all three dimensions,” Haban says. “Also, a person’s belief system about their illness will affect their outcome. That is, when a person believes they cannot get any better, they stop progressing. Toward that end, Tai Chi can foster hope and the person’s belief that improvement in their status is possible. The significance of the study is that it provides some evidence that this relatively simple and inexpensive intervention can help improve a person’s functional status.”

Quadruple amputee due to medical mistake gets a second chance to sue doctors

From The AP:

DAVIE, Fla. — When the sharp pain shooting through Lisa Strong's back got worse, she thought it was another kidney stone and expected the discomfort to pass. This time was different.

Through a series of mistakes, miscommunications and misdiagnoses, she wound up having her arms and legs amputated. She sued the doctors, who essentially blamed one another for what everyone involved agrees were profound errors.

Everyone except the jury that ruled against Strong (pictured with her two children).

The verdict came in the face of such overwhelming evidence that in a rare move, the judge tossed out the jury's decision and ordered a new trial.

As she awaits her second chance in court, Strong vividly remembers the day she became ill.

On Sept. 20, 2003, she was at her job at a mall and could barely walk. She went home, and hours later, the pain grew more intense. Her fever spiked at 106 degrees. She decided to go the ER.

"I told the nurse I had a kidney stone. I had a history of kidney stones," said Lisa, now 45.

But the stone was never treated, setting off a downward spiral that triggered a life-threatening infection and septic shock that starved her limbs of blood. Her flesh turned black as a "line of death" crept up her arms and legs. It didn't stop for a month.

"I figured if I exercised, moved around, I could get the circulation back. But it's like frostbite," she said. "My fingers turned black. My toes and the bottoms of my feet turned black. My fingers started to curl. It looked like I had held them in a fire, like they were charred."

A month after she first went to the hospital, doctors amputated her legs below the knees. Three days later, her arms below the elbows.

Two years later, Strong sued the doctors for negligence. Lawyers involved think so many mistakes were made, the jury had a hard time fixing blame.

But Broward County Circuit Judge Charles M. Greene reversed the jury's verdict and concluded the it was "contrary to the law and the manifest weight of the evidence."

Such reversals are extraordinary. According to the National Center for State Courts, judges set aside jury verdicts in only 78 of 18,306 civil trials nationwide in 2005, the most recent year complete statistics are available. That's less than one-half of 1 percent.

The two physicians — emergency room Dr. Laurentina Kocik and attending physician Dr. Jason Strong, no relation to Lisa — have appealed the judge's ruling. Written arguments are due June 1, though another trial could be at least a year from now.

Kocik, a 30-year veteran of ER medicine, insists she told Dr. Strong over the phone that Lisa Strong likely had a kidney stone. Dr. Strong works for a firm contracted by Lisa Strong's insurance company to make medical decisions if her personal doctor isn't available or chooses not to make the call.

But Kocik didn't write "kidney stone" on her diagnosis report. Asked during the trial if she wished she had written it down, Kocik said: "You better believe I wish I did ... a million times."

Dr. Strong remembers talking with Kocik and there was no a mention of a kidney stone. He also was not told she was in septic shock, so he went with a diagnosis of acute cholecystitis, a gallbladder condition unrelated to the kidneys.

Dr. Strong handled everything by phone, which is common in such cases.

"I did not come in this particular case because, No. 1, I felt the patient was reasonably stable. I was not given a history that the patient was in septic shock or that she was crashing and dying," he said.

Kocik insists she stressed the dire condition. She said she expected Dr. Strong to give a few treatment orders and immediately come to the hospital. She also didn't turn the case over to her ER replacement during a shift change because Dr. Strong was calling the shots.

"I needed him to examine and make his own decision," Kocik said. "I wanted for him to come in. I expected him to come in."

But he never did. And Lisa Strong waited hours to undergo unnecessary surgery, which further weakened her. Finally, about 16 hours after she came to the ER, a test revealed the kidney stone that was causing her life-threatening infection. It was removed.

Four months later, Lisa Strong got out of the hospital, a quadruple amputee.

Dr. Anthony Smith, chief of urology at the University of New Mexico medical school, said it is critical people get prompt treatment for kidney stones.

"You can get a massive, overwhelming infection," Smith said. "When we have patients die, it's almost always because they delayed coming into the hospital."

But Lisa Strong didn't delay in getting to the hospital.

Life has been difficult since she was discharged. She struggles to prepare meals with her prosthetic limbs. Her 10-year-old daughter, Chloe, helps her put on makeup. She's in constant pain and owes some $850,000 in medical bills.

Her 10-year marriage fell apart and ended with the couple sharing custody of Chloe and another child, 9-year-old Jesse. She gets by on monthly $1,600 in disability payments.

Lately, she has had misgivings about the new trial.

"I had decided, this is over. I'm moving forward. Now, this whole thing is back on my lap and hanging over my head. The more I thought about it, the worse I felt," she said. "Everybody says you really can't win at these things."

Chesapeake Bay sailing school teaches success to learning disabled students

From The Baltimore Sun. In the picture, Ben Catterton (left) and Riggs Brusnighan will be instructing younger campers this summer at the Brendan Sail Training Program.

The sun was bright and hot, but the waters of the Chesapeake Bay were icy as the Brendan Sail instructors launched a small sailboat at Annapolis Sailing School in Edgewater, Md.

"Yeee-oww," Riggs Brusnighan, 15, howled as he waded into the shockingly cold water to scrape off the winter's rust. Classes start soon in America's sailing capital, and there is no time to waste.

They say every child who grows up in Annapolis should learn to sail, and there are probably enough sailing schools here to accommodate them all. But the Brendan Sail Training Program is different.

It is a sailing school for teens with learning disabilities ranging from dyslexia to autism. And it isn't just the students who battle these challenges. It's the instructors, too.

The school doesn't teach sailing as much as it teaches success. At graduation, when the students take their parents out for a celebratory sail, those same parents, who hesitantly turned over their children to the Brendan instructors just two weeks earlier, often return with tear-streaked faces.

"We often hear the same thing," said Jim Muldoon, who founded the school 26 years ago. " 'My son was showing off! He's never had anything to show off before!' "

Muldoon, a Washington businessman and avid sailor, named Brendan Sail for the monk the Irish believe discovered America long before Columbus.

His own son was significantly learning-disabled, but Muldoon realized that sailing might work for the boy who could not tell right from left, but who instinctively understood everything else about the strange plane geometry of sailing.

"One day, we were on our way to the starting line for a race," recalls Muldoon, "and all these big guys crewing for me were taking instructions from Jimmy, who was maybe 9. I realized he didn't have the kind of confidence on land that he had at sea."

"Sailing is something you do not learn by reading a book but by feel, sight and touch. I don't know why it works for these kids but, boy, does it work."

Five hundred students, most of them boys, have passed through the program, which has a 6-to-1 student-teacher ratio. Almost all of the teaching is done on the water, not in the classroom, which so many of these kids, ages 11 to 18, have come to associate with failure and frustration.

This year, five of the instructors are former students, ages 15 to 18. One, Bradley Macpherson, has gone on to complete U.S. Sailing's instructor certification. (Because of his learning issues, Macpherson completed the exams orally.) Two more, Ben Catterton and Henry Cloutier, are working to complete their certification this summer.

Macpherson likes the challenge of figuring out the right path into the brains of the highly individualized students he teaches. "I had one student with Asperger's syndrome," he recalled. "He was awesome. I didn't think he was even listening to me, but in one day, he had memorized everything."

The program is overseen by volunteers Pat Ewing, an insurance broker who is himself dyslexic, and Guy Weigand, Ewing's friend and sailing buddy of many years.

The camp, which begins June 29, costs $250 for one 8-day session, $450 for both 8-day sessions.

"Ben was furious with me when I signed him up," said Chris Catterton, Ben Catterton's mother. "He thought it was another one of my dumb ideas. That was five years ago. He has missed only one day since."

Ben, Bradley, Henry and Riggs were part of the crew that sailed Muldoon's yacht to St. Maarten over Thanksgiving weekend for wintering. They left Annapolis in gale-force winds and many of them were seasick for days. But they talk about it now with enormous pride.

"I wasn't sure Brad would really leave for college when it came down to it," said Linda Macpherson, whose son will study at Salisbury University in the fall and probably join the sailing team.

"But after that sail, he knew he could do it. I knew he could do it."

Canadian disability groups fight for accessible technology

From The Canadian Press:

EDMONTON, Canada — Thirty years ago, groups for the disabled in Canada fought for accessible sidewalks, washrooms and transportation.

Today their battleground is equal access to technologies such as cellphones, hand-held devices, entertainment systems and even home appliances.

"The new technology can actually be either the great liberator for people with disabilities ... or it can begin to create a whole new set of barriers that we haven't had to deal with before," said Laurie Beachell, national co-ordinator for the Council of Canadians with Disabilities.

John Rae, 60, of Toronto suffers from retinitis pigmentosa, a progressive eye disease that caused him to lose much of his sight when he was in his 20s.

Since Air Canada modernized its in-flight entertainment system, which now uses touch screens, the retired Ontario government employee finds himself with nothing to do but sleep on long flights.

"You used to be able to navigate the entertainment system in an airplane by buttons on the side of your seat ... but with these flat screen entertainment systems, I no longer can. My independence has been taken away from me," said Rae, who volunteers with the Alliance for Equality of Blind Canadians.

On Rae's computer, the screen technology that reads documents aloud doesn't recognize some formats that are commonly used when transmitting text, so he simply can't access the information.

"I consider it discrimination," Rae said.

"Manufacturers of technology, manufacturers of household appliances continue to develop and manufacture equipment and technology that we can't use."

Groups such as the non-profit Neil Squire Society, hope to change all that. The society, which focuses on using technology to "empower" the disabled, is pressing Canadian regulators to force companies to make products more user-friendly for the disabled.

Last fall, hearings were held with the Canadian Radio-television and Telecommunications Commission where groups representing the disabled argued for better access to things such as cellphones.

"Basically (we) were trying to make the case that cellphone companies don't do a really good job of ensuring that there are products for people with disabilities that meet their needs," said Harry Lew, the society's manager of research and development.

People with physical mobility problems, who may have spasms or can't use their hands, can't use many services on hand-held devices, he said.

"So you can't access email if you're a person with a mobility impairment right now. You can't surf the web on a handset because there just aren't any solutions.

"That's the classic case where people with disabilities are lagging behind."

Jim Johannsson, a spokesman for Telus, said the company is making efforts to help people with disabilities.

He said Telus, which participated in the CRTC hearings last November, has enhanced its directory assistance capabilities by using more voice recognition technology. There is also a service that will convert emails from text into audio for those with impaired vision.

Telus has an application before the CRTC for approval of a video relay service for its deaf customers, so that one or both people on either end of the connection can use sign language.

But these systems require national standards and CRTC approval, Johannsson said, to ensure the same level of service across the country.

"We know that with technology you can allow people with certain disabilities to be incredibly productive and wherever possible we're making those investments," he said.

The challenge is determining whether governments, companies or individuals should have to pay for such services, Johannsson said.

Ontario is believed to be the only province to have passed legislation that aims to improve access to goods and services for the disabled, including information and technology.

Each year in Canada it is estimated that people with disabilities spend about $25 billion on goods and services.

Bill Adair, executive director of the Ontario branch of the Canadian Paraplegic Association, said while technological innovations are important, removing prejudice against the disabled is still at the heart of the issue.

"If you fix (information technology) and you still leave the whole concept of prejudicial attitudes towards people with disabilities intact, you really haven't done a whole lot."

Amy Roloff says people with disabilities must communicate their abilities to others

From OnMilwaukee.com:

Just over four feet tall, Amy Roloff, the star of the TLC reality television series "Little People, Big World," is a little person with a big message. Consequently, Roloff will be the keynote speaker at Independence First's 8th annual power lunch, scheduled for 11 a.m. June 16 at the Midwest Airlines Center, 400 W. Wisconsin Ave. Tickets are $50.

Independence First, 540 S. 1st St., works to empower people with disabilities and promotes community integration through education, advocacy, independent living services and coalition building. The organization started in 1979.

Roloff, who was born with a form of dwarfism called acondroplasia, is married to Matt, who is also a dwarf. The couple have four children, one of whom, Zach, is also a little person. Their other three children are average size. The family lives in a suburb of Portland, Ore. on a 33-acre pumpkin farm.

Juggling a family, farm and a popular televisions series is definitely challenging, but Roloff's can-do attitude and refusal to make excuses for herself or her family make life a little bit easier.

OnMilwaukee.com recently chatted with Roloff about her family, the show, how she overcame obstacles and the importance of communicating needs to achieve goals.

OnMilwaukee.com: What will be the core of your message at the Independence First event?

Amy Roloff: Of course my main message is to support Independence First, and all of the great things they are doing for people with disabilities. After that, I believe a person with disabilities must come to terms with their disability so they can help others to see them as a person who can accomplish the task at hand.

A lot of times, the door of opportunity shuts because of other peoples' perceptions of a disabled person's potential. So we need to be able to communicate our abilities to others.

OMC: What have been your biggest challenges as a little person?

AR: Attitude and self-perception. For a long time, I accepted that I was a person with physical challenges, but I just wanted to blend in with average-sized people. I wanted people to forget that I was a little person.

By the time I was in college, I was so focused on wanting people to get past my physical stuff that I couldn't let them in. I realized I was making a bigger issue out of my physical appearance and it was affecting my relationships with the girls in my dorm.

It was a gradual process, but I started to look more at myself and finally stop worrying about what others were thinking. I knew that my fears and "what ifs" were affecting my life and my relationships.

OMC: You could easily feel or act victimized, but you don't. You seem like a very empowered person. Would you agree?

AR: Luckily, I come from a family that's big on ownership. In college, when I was struggling with my self image, I started to think of ways that I could improve the situation and specifically, how I could better communicate with people so they could get past my disability. I'm very big on not expecting people to change their environments for me.

OMC: Do you ever wish you were an average-sized person?

AR: I did at one time, but not now. Being a little person has been the best thing for me because it has made it possible for me to really appreciate life, the differences between people and the ability not to judge others.

OMC: How was your family "discovered" for the television show?

AR: We had been in other national media and a producer came to us and asked if we were interested in shooting a pilot episode. We agreed, but the first network declined. However, our producer really believed our family had an important message, so he pitched it to TLC and they were interested.

At first, I was skeptical. You hear the words "reality show" and it's a little scary. Here I was working so hard for my kids to have a "normal" upbringing and I knew how easy it would be to get caught up in the media and the attention. Finally, we decided to do ta few episodes and then thought we'd be done.

We decided to continue the show because of the positive feedback and we really wanted to get the information out there ... about little people.

I have always had the firm stance that TV will follow us, not the other way around.

OMC: How accurately does the show portray your family?

AR: It's pretty accurate ... There's nothing on the show that I regret.

OMC: Do you know any of the other famous reality TV families? Jon and Kate Gosselin? The Duggars?

AR: I have never met the Duggars, and met Jon and Kate only one time. It was a total coincidence: Matt and I went on a trip to Hawaii and Jon and Kate were there renewing their wedding vows.

OMC: What are the negative aspects of being on the show?

AR: The positive outweigh the negatives, but of course, there are negative aspects. The hardest part is what people write in blogs about us and the judgements that are made after a single episode of the show. If only people could remember this is TV, and there are editors putting bits and pieces of a life together to create a half-hour of entertainment. But we put ourself in the limelight, and it comes with the territory. We made this choice.

British government argues that data about abortions because of disability must remain secret

From The Independent in the UK:

Data on the number of abortions performed for conditions like club foot and cleft palate must remain secret, government officials argued May 29.

An appeal panel will listen to experts who believe the numbers must remain confidential after the Information Commissioner ruled that they must be disclosed.

Such data - involving abortions carried out for reasons like cleft palate, club foot and webbed fingers or toes - was published up until 2002.

But ministers stopped the practice if fewer than 10 cases were involved, saying there was a risk the women or doctors involved could be identified.

The ProLife Alliance challenged this stance in 2005 and requested a release of the figures under the Freedom of Information Act.

The Information Commissioner ordered ministers to publish the data, but the Department of Health refused and appealed against the commissioner's decision.

Ministers originally called for the hearing to be held in private so the data could be discussed.

An agreement has since been reached with the Information Commissioner's Office for only part of the hearing to be heard in private.

Abortions can be carried out up until birth under category E, which relates to disability, as long as two doctors agree the procedure should be performed.

There is no list exempting certain conditions such as cleft palate or club foot.

A spokeswoman for the ProLife Alliance said: "We believe there should be absolute transparency and openness about these statistics.

"Abortion is not a right; it can be performed if you fulfil certain conditions under law. Otherwise it remains a criminal act.

"We have been very clear that we have asked for information about all abortions, not just those after 24 weeks.

"This case is about transparency."

She said it was "nonsense" for the Department of Health to suggest doctors could be at risk of being identified.

People who wished to campaign or pray outside abortion clinics only had to go on the Internet to find a clinic rather than looking through Department of Health figures, she said.

She said it was the department's job to adopt a neutral position on the issue rather than "taking sides" in the debate.

A spokesman for the Department of Health said: "Data on abortions is considered highly sensitive personal data.

"The Office for National Statistics guidance does not recommend releasing any data with a count of less than 10. Releasing such data could increase the risk of identifying individuals.

"The guidance provides clear boundaries to make as much information about abortions available as possible, whilst protecting the individuals concerned - both patients and doctors.

"When the ProLife Alliance asked the Department to release the full data in 2005, we withheld it to secure individuals' confidentiality.

"However, following an appeal from the ProLife Alliance, the Information Commissioner ruled that the department should release the full data.

"The tribunal hearing taking place on 29 May - 3 June will decide whether the data should be released."

A son's memoir reveals the ghosts in a family when a disabled family member is hidden in an institution

From the intro to a longer story in The Baltimore Sun:

Steve Luxenberg is a journalist and a son, and he is scrupulous about fulfilling his differing responsibilities down to the smallest detail. But sometimes, the two roles he's played haven't always jibed.

On at least one notable occasion, the son prevailed. At other times, the reporter won out.

Luxenberg's book, Annie's Ghosts, which was published this month, is part journalism, part social history and part family memoir. It also can be read as the author's struggle to reconcile the competing parts of himself, to pay his familial duty to his mother while remaining true to the values of his profession.

"I think I did succeed in being both a journalist and a son," says Luxenberg, an associate editor for The Washington Post, and a former reporter and editor for The Baltimore Sun.

"At least, I hope I did. I didn't hold back on the readers. I didn't leave out facts of any importance, but I also remained empathetic to my mother. One bookseller told me, 'There's a lot of love in your book.' "

That author's internal conflict began in 1995, when he learned that his mother was not the only child that she claimed to be for nearly all of her life. In reality, Beth Luxenberg had a disabled younger sister named Annie, who, decades earlier, had been sent away to an institution in Michigan. Beth had hidden Annie's existence from everyone: her neighbors, her closest friends, her three sons and two stepdaughters, and - possibly - her husband.

After Beth died in 1999, her journalist son set out to find out as much as he could about the aunt he never knew. He also wanted to figure out why his mother, who taught her children to always tell the truth, had lied about a matter of such importance.

In the month since it was published, Annie's Ghosts has received some national attention. There have been reviews in The Washington Post and The Detroit Free Press, and a lengthy interview with the author was broadcast recently on National Public Radio's All Things Considered.

Critics have commented on the hybrid nature of Annie's Ghosts, which mixes objective and subjective methods of storytelling. It's a rare memoir in that it contains 22 pages of footnotes.

The author's obvious passion for the truth is one of the most touching aspects of the manuscript. Luxenberg bends over backward to avoid inadvertently coaching his sources and tainting their recollections. He is painstaking about distinguishing between what he knows for a fact and when he is unavoidably drawn into making suppositions.

Even his Web site ( www.steveluxenberg.com) has been professionally edited for accuracy.

That compact with his readers is why Luxenberg eschewed the narrative storytelling style now in vogue, which uses fictional techniques to tell real-life stories. His prose style is plain and unadorned, without fanciful images or hyperbole.

"One of the things this book is about is the distortions that memory imposes on truth," he says.

"In some instances, I'm interviewing people about events that happened 50 years ago. I couldn't bring myself to pull a fast one on the reader by telling them that this is the way things really happened.

"I also saw it as an opportunity to teach readers about the methodology that journalists use. My experience is that people enjoy being shown how the sausage is made."

Yet, for all Luxenberg's diligence, there was one time when he deliberately allowed an error to make it into print. When Beth Luxenberg died, Steve prepared information for the obituary that ran Sept. 3, 1999, in The Free Press. The article describes her as "an only child of immigrant parents" - a statement the author knew to be false.

"That is the most mystifying thing to me," Steve Luxenberg says.

"I had known about my aunt for several years. So how could I, as a journalist, write that my mother was an only child? Maybe I was being respectful of the way she'd want to be remembered. Or maybe I didn't fully believe that she really had a sister."

Annie's existence came to light in 1995 in a roundabout manner, in a phone call made by a social worker to Luxenberg's half sister, Marsha Rosenberg. She told Steve about Annie, and they later told their siblings.

An end-of-life expert faces the ethical questions she studies when her husband becomes paralyzed

From the intro to an extended feature in Salt Lake Tribune in Utah:

The moment Brooke Hopkins' heart stopped beating, Peggy Battin found herself in a scene whose ending she had written time and again.

Doctors, nurses and aides swarmed Hopkins' hospital bed, urgently working to save his life. Battin watched in horror as his eyes rolled back and his face grew ashen. A burly aide screamed at her to get out, but she didn't budge. She couldn't leave her husband of more than 20 years. Not now. Not ever. (The couple is pictured.)

"Oh, my God," she thought. "This could be it."

It was a time of decision and pain that Battin had described often through decades of studying the issue of death. Beginning in the 1970s, she was a pioneer in the field of medical ethics, specializing in end-of-life questions. Suicide.

Euthanasia. Do Not Resuscitate orders. When and how to die. These were the knotty subjects she debated and discussed in the classroom and courtroom.

Yet it was always about other cases, other people, other situations.

In one unexpected episode in City Creek Canyon on an ordinary November weekday, Battin's personal and professional lives collided.

She knew by heart the arguments for not resuscitating fatally injured patients. She had defended vigorously a person's right to be the final architect of his own death. Yet she also knew her husband well enough to believe he would want to live even if completely paralyzed. But what if he hadn't? Could she have signed a do-not-resuscitate order? Or worse, if he asked her to help him end his life, could she have done it?

Hopkins' life-altering accident on Nov. 14, Battin says, "has presented me more than an intellectual challenge to the views I've been defending over the years. It is a deeply personal, profoundly self-confronting challenge."

Michael Battin has witnessed his mother's metamorphosis.

"Not a single part of her world is the same as it was six months ago," he says. "It is the most fantastic irony you could imagine."

U.S. Supreme Court considers when public schools must reimburse parents of special ed students for private school tuition

From The New York Times:

In a case with potential financial repercussions for school districts and families alike, the United States Supreme Court will soon decide when public schools must reimburse parents of special-education students for private-school tuition.

The case before the court involves a struggling Oregon high school student, identified in court documents only as T.A., whose parents enrolled him in a $5,200-a-month residential school after he became a heavy marijuana user and ran away from home.

Although his guidance counselor had noticed his difficulties and arranged an evaluation, the boy, who had angry outbursts and a history of behavioral problems, was found ineligible for special-education services at his high school in the Forest Grove School District.

“The district evaluation looked only at whether he had learning disabilities,” said Mary Broadhurst, the lawyer representing the boy. “Even though staff notes mentioned suspected attention deficit hyperactivity disorder, they never evaluated him for it. So they refused to help.”

Forest Grove, in its effort to reverse an appellate court decision ordering it to pay the boy’s tuition, argues that precisely because the boy never received special-education services in public school, he is not eligible for tuition reimbursement under the federal disabilities law.

Disability rights advocates, backed by the federal Department of Education, argue that the law must allow such reimbursement, even for children who were never in special education, or risk forcing them to waste precious learning time languishing in classrooms where they are not getting an appropriate education.

School districts, though, contend that paying for private school for students whose parents enrolled them without district consent — and without previous eligibility for special-education services — diverts precious resources from the millions of special-education students served in the public schools.

In this case, Forest Grove School District v. T.A., No. 08-305, the district said the family agreed with the initial finding that their son was not eligible for special education, and removed him to private school without following all the procedures to get what ultimately was a diagnosis of ADHD and other problems for their son.

The Supreme Court, which heard arguments in the case in April, is taking its second pass at the issue. Two years ago, in New York City Board of Education v. Tom F., the court deadlocked after Justice Anthony M. Kennedy recused himself without an explanation. In the case, Tom Freston the former chief executive of Viacom, sought tuition reimbursement after enrolling his learning-disabled son in private school without ever trying public school. The split left standing the appellate court ruling in favor of Mr. Freston. In the Forest Grove case, the Federal District Court ruled that the boy’s family could not receive reimbursement, but the decision was overturned by the appellate court.

There are substantial differences between the two cases. In New York, a wealthy family sought tuition reimbursement without trying public school. In Forest Grove, though, T.A. was in public school from kindergarten until his junior year, receiving extensive in-home help from his mother and older sister to move from grade to grade but unable to get special-education services, despite his mother’s pleas for “some method of teaching more appropriate for him.”

But legally, both cases center on the interpretation of a 1997 amendment to the Individuals with Disabilities Education Act, which provides that disabled children are entitled to a “free appropriate public education.”

That amendment says that parents of children with disabilities “who previously received special-education” services in a public setting may be entitled to reimbursement for private-school tuition if their public school did not make a free appropriate public education available in a timely manner.

While most of the nation’s six million special-education students attend public school, the law allows parents to seek public financing for private school if the public schools cannot adequately serve their children, and almost 90,000 students are in private placements — most of them with their public school’s agreement.

But increasingly, thousands of families unilaterally enroll their learning-disabled, emotionally disabled or autistic children in private schools — often with staggeringly high tuitions — and then seek reimbursement.

T.A.’s family, backed by the federal Department of Education and many disability rights groups, say that reimbursement must be available, even if the school district has refused to provide special-education services.

Otherwise, they say, school districts would have an incentive not to identify a student as disabled or provide services.

“A lot of kiddos, like this one, develop emotional problems in high school, when the stress gets greater,” Ms. Broadhurst, the lawyer, said. “In this case, the family asked for help at school and they were denied. If the Supreme Court says that means they can’t get reimbursement, there’s a perverse incentive from schools to sit on their hands and not find the kid eligible, but just wait until the parents find some other solution.”

The Education Department said in a friend-of-court brief that a policy precluding reimbursement for students who had not already received special-education services in the public schools would produce “absurd results, especially in cases like this one, where the only reason the child did not receive public special education is that the school wrongly refused to provide it.”

But the Forest Grove district, backed by New York City and many school groups, argues that unless reimbursement is limited to those who have previously received special-education services in the public schools, families have a troubling incentive to keep their children out of public school.

“The whole point of IDEA is to encourage cooperation between parents and school districts to ensure the education of disabled children in as mainstream a setting as possible,” said Michael Best, general counsel to the New York City Department of Education. “If you allow parents to place their children in private school without ever trying public school, it undermines that cooperation.”

Mr. Best said reimbursing parents for private-school tuition, even if they never considered public school, would lead to a ridiculous situation in which parents who tried public school and complied with the procedures to determine whether private-school placement was required would have a harder time getting reimbursement for private-school tuition than those who never set foot in public school.

The New York City schools paid $89 million for private-school placements for disabled students in 2007-8, up from $53 million two years earlier.