Next week, Denver will host the thirtieth annual National Veterans Wheelchair Games, a massive event that includes more than 500 wheelchair athletes competing in everything from archery and bowling to kayaking and quad rugby. While they are here, these vets will no doubt increase local awareness about people who use wheelchairs.
And that's something that Deena Larsen, who suffers from a genetic disorder that has destroyed her knees, applauds. For many years, Larsen could walk and hike, but she is now in her chair more or less permanently, although it allows her to still get around quite well. "I am in the 99th percentile in terms of ability. I have balance and everything else," says Larsen. "So if I can't go somewhere, you can bet it's not accessible for other people."
Which is why she never hesitates to speak up. "I have been in both places," she points out. "I am in sort of a unique situation: I know both worlds. And I had never thought about it, which is why I am thinking about it now." And thinking about it, and thinking about it.
Last September, Larsen organized a group that tried to go to a public meeting on health care hosted by Congresswoman Diana DeGette — when they discovered there were no accessible entrances. When Larsen asked for another, accessible meeting, DeGette's office apologized and honored the request.
Larsen also encouraged the University of Colorado to provide an online accessibility guide with information about parking, elevators, restrooms and power-assisted doors — information that CU has since added to its website.
In 2008, Larsen wrote to the Denver Post, pointing out that its restaurant reviews didn't include information about whether an eatery was wheelchair-accessible. "I rarely eat out," she wrote, "but I expect to have the same rights as everyone else." At the bottom of her letter, the Post printed this: "Starting today, the Post will indicate in all reviews whether a restaurant is wheelchair-accessible."
Larsen was equally upset by a Rocky Mountain School of Dance performance she attended last week in which she thought a wheelchair was used as a symbol of despair and hopelessness. "The only time the person was happy was when they were dancing out of the chair," Larsen says. "I said, 'Wait a minute, that isn't fair.'" And she said it to the RMSD, in an e-mail and voice-mail message that shared her frustration over the company using "an able-bodied person" rather than an actor who actually uses a wheelchair. "It's like the blackface minstrel show in the '30s," she says. "I don't believe there should be censorship. But be aware, if you are going to portray any minority group by anyone who is not a part of that minority group, you should have an explanation."
And Lynne Patton, who choreographed the show, does. Titled Waiting, it's about a friend of hers, a former dancer who now uses a wheelchair. "It portrays her struggle," says Patton, who founded the children's dance studio in 1992. "Our children have learned that it is a struggle to be in a wheelchair. There is no way we would ever demean or portray anyone in a negative way who was in a wheelchair."
And while she's heard Larsen's complaints, Patton says, "Art is freedom of speech. She has the right to feel the way she feels. I have the right to portray my friend."
Wednesday, June 30, 2010
Colorado wheelchair user complains that wheelchair used in dance performance as sign of despair and hopelessness
UN says shock treatments at Judge Rotenberg Center in Mass., torture not treatment; story on "Nightline" June 30
It may look like any leafy New England campus, but inside one Massachusetts school for special needs children, the method of teaching at work is anything but ordinary.
The Boston-area's Judge Rotenberg Center educates and treats enrollees ages 3 to adult, all of whom are struggling with severe emotional, behavior, and psychiatric problems, including autism-like disorders. And for about half of the 250 students here, undesirable behavior means getting hooked up to a special machine and administered an electric shock.
The skin shock treatment, used only after both a court and the student's parents have approved, has drawn criticism for years. But after the release of a recent study by Mental Disability Rights International, Rotenberg has come under the scrutiny of no less than the United Nations, which is calling the school's practices "torture."
"To be frank, I was shocked when I was reading the report," said Manfred Nowak, the UN's Special Rapporteur on Torture. "What I did, on the 11th of May, was to send an urgent appeal to the U.S. government asking them to investigate."
In a response to ABC News, the Judge Rotenberg Center wrote: "It is just as ridiculous to equate JRC's scientifically validated aversive therapy with torture as it is to call a surgeon's knife cutting into flesh an 'assault with a dangerous weapon.' If a two-second shock to the surface of an arm or leg can stop a behaviorally disabled child from blinding himself through eye-gouging, from pulling out all of his own teeth or from starving himself to death, no sensible person would refuse to use such a humane treatment. The alternative is to be drugged into insensibility, restrained, secluded and warehoused in a state mental hospital-in effect, a form of living torture.""
In a 2007 interview with ABC, Matthew Israel, the doctor who runs the Rotenberg Center and developed the shock treatment equipment, had his own take on the line between therapy and torture. "The real torture," Israel said, "is what these children are subjected to if they don't have this program. They're drugged up to the gills with drugs that cause them to be so sedated that they essentially sleep all day."
The patients wind up in state institutions or warehoused in jails, Israel said.
For about half of Rotenberg's students, a mix of adults and children, shock treatment is a regular part of life, meant to help teach them to stop hurting themselves or others. Their cases are extreme. Many here cannot speak. And many are real dangers to themselves, such as the child who would bite and bloody himself from his knuckles all the way up his arm, so that it looked as if he had scales, his mother said. Or another student who gouged out his own eye and blinded himself.
The shock treatment "has no detrimental effects whatsoever," Israel said in the 2007 interview with ABC.
The treatment works by hooking the students up to electrodes worn on different parts of the body, which communicate with a small device carried around in a backpack or fanny pack. When the student engages in forbidden behavior, a staff member administers a shock. Some students wear the electrodes as much as 24-hours a day, seven days a week. And sometimes for years.
"The device is simply a device that administers a two-second shock to the surface of the skin that has absolutely no side effects and is extremely effective as a corrective procedure to encourage children not to show violent behavior, not to show self-abusive behavior," Israel said.
The skin shock is not used until a court and the child's parents have approved.
The treatment is not painless, however. "And if it didn't hurt it wouldn't be effective," said Israel. "It has to hurt enough so that the student wants to avoid showing that behavior again."
The skin shock is not used until a court and the child's parents have approved.
As a compliment to the punishment, Rotenberg houses a reward room, where students can buy prizes with points earned for good behavior.
"I'm quite confident that the procedures here are all based firmly on the professional literature of behavioral psychology," said Israel, whose theory of reward and punishment is based on work he did studying under the psychologist B.F. Skinner at Harvard.
The price tag per student at Rotenberg is $200,000 a year, and is financed by tax dollars.
Israel and his supporters say the school's system of reward and punishment is both appropriate and effective. When one student began his shock therapy, he repeatedly would hit himself over the head. And he had nearly starved himself to death. But thanks to the therapy, school officials and his parents believe, he has shown major improvements.
Another student, Mark Doherty started biting himself when he was seven or eight. Psychiatric drugs had rendered him zombie-like, often comatose and drooling, according to his mother. And years of other treatments were not effective. Fifty schools rejected him before he started at Rotenberg. The shock treatments he has received have made a difference, say his parents.
Mark, now 24, still lives at the center. But he is able join his family for picnics and at restaurants, a major success. And for the first time after the treatment started working, the Dohertys say, they can hug their son.
"When he stopped biting himself," said Linda Doherty, "when it went from 40 applications [of the skin shock] one week to 18 applications the next week, in my heart and soul I know it's the right thing for my son."
Mark's father, Richard, added, "It's definitely not the end of the rainbow, but it's the best for our son right now."
But Eric Rosenthal, an advocate for the disabled, disagrees. He says there are a wide range of other treatments available. "A person with a disability is vulnerable," he said, and should be considered distinctly different from an adult who chooses to undergo the treatment.
"A child with a disability, who has to get this day in and day out? The courts have approved it, but did anyone ask the child if they want to be there?" he said.
Rosenthal's recent report on the center's tactics is what spurred a United Nations official into action. For years after ABC first reported on Rotenberg in 2007, State Sen. Brian Joyce tried repeatedly to shut down the school, without success.
"If this same treatment were allowed on terrorists in Guantanamo Bay, there would be worldwide outrage,'' he said.
Now, after Rosenthal released his organization's report, the United Nations has become interested. "I've visited many countries where electric shocks are applied, unfortunately," said Nowak, the U.N. specialist. "Of course this is absolutely prohibited."
Nowak said that when he finished reading Rosenthal's report, he sent an urgent appeal to the U.S. government, urging an investigation into the school.
"This is torture,'' said Nowak. "Of course here they might say, but this is for a good purpose because it is for medical treatment. But even for a good purpose -- because the same is to get from a terrorist information about a future attack, is a good purpose. To get from a criminal a confession is a good purpose.
To Rosenthal, there are two factors for the Obama administration to consider; the United States' international treaty obligations on torture, and President Obama's own reputation. "President Obama has staked his international reputation on ending torture and the world is now looking,'' said Rosenthal. "Are we gonna live up to our obligations and is President Obama gonna live up to his promise to end torture by the United States government?"
The issue is clear, says Nowak: "You cannot balance this. The prohibition of torture is absolute."
BARSTOW, Calif. -- An extra step may be required for Barstow disabled residents wanting to add wheelchair ramps or other modifications to their homes.
The city planning department is developing an ordinance that would allow a disabled resident to apply for an exemption to a provision in Barstow’s zoning and land use code if it prevents them from accessing their homes.
Putting a wheelchair ramp or installing other modifications in a home currently requires a building permit, said City Planner Mike Massimini. But under the proposed reasonable accommodations ordinance if a person can show proof that he or she is disabled or is acting on behalf of someone who is disabled, depending on the request, another permit may not be necessary.
“In many cases it does not require a building permit,” he said. “Really it depends on the type of work.”
If another permit is required, the person can file a reasonable accommodations request and an application for the additional permit at the same time.
The applicant would also have to include proof that the exception or modification to the city’s zoning code is necessary to provide access to the person’s home, as well as any other documentation the city planner thinks is necessary. City staff must approve or deny the application within 30 days of its submittal.
The city’s zoning code does not discriminate against the disabled currently, according to Massimini. But the city is developing its reasonable accommodations ordinance to be in compliance with the Federal Fair Housing Act and the California Fair Employment and Housing Act. Massimini didn’t know of any penalties in place if the city doesn’t have a reasonable accommodations ordinance in place, he said.
The ordinance will be included in the city’s housing element, which will come before the City Council July 19. Massimini brought the proposed ordinance to the Planning Commission for discussion Monday.
At the Planning Commission meeting, Commissioner Carmen Hernandez asked Massimini how the city would keep track of those who have successfully submitted a reasonable accommodations request. Massimini said the city won’t actively track them, but it would be useful in case the city receives a complaint from a neighbor.
When Felicity Ngungu, a grandmother of a 27-year-old autistic man, set up Kenya Autism Society in 2003, her aim was to create awareness and help parents ease their financial burden.
With many parents spending millions of shillings visiting one doctor to another, Ms Ngungu sought to sensitise the public on detecting the condition at an early age to avoid future financial strains.
New findings from the Autism Society of Kenya show that parents are spending a larger portion of their income on children diagnosed with autism.
Ms Ngungu, says some doctors often gives parents false hope that their children may be cured of the disorder with many spending millions of shillings on quacks who promise to do so.
“Autism is a disorder that is largely unknown among many people. Often children with this disorder are mistaken to be slow learners. The disorder is easier to manage once detected in the early stages of one’s life,” said Ms Ngungu.
Autism, often described in Kenya as slow learning, affects an estimated four per cent of the Kenyan children.
Working parents of autistic children are often the most affected.
A study released early this week shows that mothers of children with autism often see their careers affected as they confront greater demands on their time, inflexible workplaces and increased medical costs.
According to a new study by researchers at Washington State University Vancouver, based on a survey of 326 families, slightly more than half the women polled worked fewer hours to accommodate the needs of their child and three out of five had not taken a job because of their child’s autism.
To care for the child, one-quarter had taken a leave of absence and nearly as many had not taken a promotion. Nearly 60 per cent had suffered financial problems in the past year.
These are some of the experiences that led Ms Ngungu to raise awareness in Kenya on the subject and to encourage the many parents who had lost hope that the situation could not be managed.
She says public awareness will help parents stop spending big bills in hospitals with hope that the disorder will be cured and instead focus more on managing and rehabilitating people with autism.
“Our society has formed a culture of believing that a disability has to be physical. Many times even parents end up denying that their children are suffering any disorder as it is not physically portrayed. Autism being a behavioural disorder is often ignored and children suffering this disorder are dismissed as being indisciplined,” said Angela Mogaki, who runs an integrated centre for autistic children at City Primary School.
The centre relies on specialised staff and special learning materials different from those used in the mainstream learning.
“All these coupled with the special diet for autistic students make management of the disorder very expensive hence the need for more local support,” says Ms Mogaki.
On average, a student is expected to pay a total of Sh37,000 when joining the unit and for each term students pay Sh27,000.
The unit’s matron admits that although they receive subsidies from the Ministry of Education, there is need for more support so that the fees burden is lessened for the parents which she says is a factor that is locking out many from registering autistic students at the unit.
Experts advise that once a parent establishes signs of autism in a child, the first step is to liaise with medical experts and if the disorder is confirmed the next step is working out an appropriate diet for the child.
Since the rehabilitation of autistic children largely depends on their cognitive abilities, experts say it is easier to assist a young toddler than a child over 14 years, urging that more attention should be given to early detection of the disorder.
Autism can be detected at an age as early as two years and the general characteristic is delayed milestones after birth.
Autistic children tend to be slower than their peers with delayed speech development, disturbed sleep patterns, lack direct eye contact and are more silent unlike their peers.
Many of these symptoms are often ignored due to the little knowledge available about the disorder.
The Autism Society is pushing for the Ministry of Public to enact new guidelines that allow for faster diagnosis.
“We participated in formulating the guidelines for pre-marital and lower age assessment about three years ago and to date the ministry has not launched the said guidelines. This is a big challenge because there is little information about the disorder to the public. At the age below five years, the disorder is quite noticeable and more manageable,” says Ms Ngungu.
Although the government has expressed support for people with Autism, she notes that a lot more needs to be done especially to educate parents on how to detect the disorder in its early stages.
The Autism society depends largely on membership subscriptions from parents of Autistic children and occasional support from corporates and individual donations.
Lack of a more extensive budget over the years has made it almost impossible for the society to extend its operations to cover most parts of the country.
Until April 2010 when UNDP pledged to fund an Autism awareness programme in the eight provinces, little had been done in other parts of the country limiting the society’s operations to cover mainly Nairobi province.
The integrated unit does not offer boarding facilities further making it impossible to accommodate pupils from outside the city.
The society is banking on the three year funded programme from the UNDP to help it reach out to as many people living with the disorder as possible and hopefully establish an Autism unit in every province.
California parents sue school district over non-challenging special ed curriculum they say is "babysitting"
Patrick MacAuley is on his school’s honor roll.
The 13-year-old earns 100 percent on many of his assignments. There are few red marks on his homework and hardly any corrections or comments.
That’s precisely what concerns his mom.
As a child with attention deficit hyperactivity disorder and dyslexia, Patrick was enrolled in what’s known as a Special Day Class at Warren T. Eich Intermediate School in Roseville last year. But his mother Dodie MacAuley calls it “babysitting.” His homework — even the papers marked “A” — contain misspellings, incomplete and incorrect answers. He reads at a third-grade level.
“We just want him to get an education,” she said.
Dodie and her husband Ian MacAuley (pictured) say the Roseville City School District has failed to properly accommodate their special needs child after the district refused to conduct — and pay for — an independent evaluation of Patrick. The evaluation would help establish standards for Patrick’s education and hold the district accountable for meeting them.
The parents made the request because they’re unsatisfied with the results of an occupational therapy assessment completed by the district, which shows Patrick isn’t eligible for special services.
The school district responded by initiating legal action against the family in June.
“We’re obligated to pursue this course of action, if the district feels the assessment is appropriate,” said Tim Ribota, director of student services for the Roseville City School District.
He said that federal and state laws impose a mandatory obligation on public school districts to file for due process in this situation. He said the district “stands behind the integrity of its staff and believes its assessment is appropriate.”
The problem, though, is that federal special education law doesn’t specifically define “appropriate,” which sometimes leaves parents and school districts at odds. And this confusion has contributed to sharply escalating costs associated with educating students with special needs.
The Roseville City School District currently serves around 1,100 children with identified disabilities, out of a total population of around 9,800 students in its 17 elementary and middle schools.
Ribota said the district doesn’t know yet how much the current legal proceedings will cost, although he said similar cases have cost other districts up to $30,000. The Gutierrez Law Firm is representing the district. Conducting an independent evaluation varies on a case-by-case basis, but typically costs between $300 and $5,000, Ribota said.
This doesn’t sit well with the MacAuleys who question why a district with a $3 million deficit is spending money on legal fees.
“(Patrick) only has a year left in the district,” Dodie MacAuley said. “So why is the school district wasting money when they could be spending it on children?”
The family has already paid about $6,000 in legal fees.
“This is all over a handwriting goal,” she said. “Just give us a handwriting goal.”
This goal would set measurable standards for handwriting — proper capitalization, spacing and more — and hold the district accountable for implementing a program geared to her son’s needs.
But Ribota said because the district’s assessment of Patrick determined that his occupational therapy scores don’t indicate an area of need, he isn’t eligible for services, which means a handwriting goal can’t be established.
Dodie and Ian MacAuley say they’ve always wanted the best for their son and daughter, both adopted by the Roseville couple as babies out of foster care. But this road hasn’t been smoothly paved, especially for Patrick. Doctors diagnosed him with attention deficit hyperactivity disorder when he was in kindergarten and put him on medication. As a first grader, he was diagnosed with dyslexia.
Several years ago, Patrick’s parents placed him in public school before switching to Wings Learning Resources in Citrus Heights, which closed last year. So he returned to public school in November to complete 7th grade.
At this time, the school placed him in a Special Day Class for math, language arts, reading and writing, and an elective — these classes target students who have more intensive needs than can be met by regular school programs. He was mainstreamed for science.
In January, the district conducted assessments in the areas of speech and language, psychological and occupational therapy, and determined that Patrick didn’t qualify for additional services. But the parents were unsatisfied with the findings.
“What they do is the bare minimum,” MacAuley said. “It’s not thorough. They’re never doing complete assessments.”
In the June lawsuit, the district asked the judge to determine if the district’s occupational therapy evaluation is appropriate and, if so, the district can deny the request for an independent evaluation.
“We agreed it’s appropriate at this time,” Dodie MacAuley said.
But the MacAuleys said the district refuses to add “at this time” to the statement.
On June 17, both parties met for a second hearing in front of Office of Administrative Hearings Judge Deborah Myers-Cregar. Because the parties couldn’t reach an agreement, the judge will issue a decision in early August.
“That’s pretty unusual,” said Michael Rosenberg, executive director of the Development Disabilities Area Board III for the State of California, which serves Placer County. “It’s not standard procedure (to file a due process hearing). They should be finding a solution and negotiating.”
The federal Individuals with Disabilities Education Act — which affirms the right of all disabled children to a free, appropriate public education — intends that school districts and families seek resolution through mediation prior to filing a request for a due process hearing.
The purpose of the law is, in part, to ensure that children receive services deigned to meet their unique needs and prepare them for employment and independent living. Patrick has dyslexia, which impairs his ability to read. His parents worry that his undeveloped handwriting and reading skills, if not addressed now, will lead to problems down the road.
“In my experience, kids who struggle in school become the class clowns, (develop) behavior issues, end up leaving school or end up in continuation schools that are maybe not supportive of their learning issues,” Rosenberg said. “It takes a great deal of fortitude and commitment in families to find a solution. If you can’t read, you have a difficult time being successful in school and in life.”
David Strathairn (pictured) has reportedly been lined up to appear in Syfy's new pilot Alphas.
The project, which is being directed by Lost's Jack Bender, focuses on a group of people with superior mental skills who work together to solve crimes.
Deadline reports that Strathairn is in talks to play the group's team leader.
His character is said to be eccentric and absent-minded but also good at manipulating people to get what he wants.
Meanwhile, Ryan Cartwright has allegedly signed up to play a member of the team with Asperger's syndrome. His character is reportedly able to intercept wireless communications as they pass through the air.
Cartwright has previously had roles on Bones and Mad Men.
Goldman Sachs COO Gary Cohn (pictured), who is testifying in front of the Financial Crisis Inquiry Commission June 30, has a short attention span and dyslexia, which means he "has trouble spelling and following character-driven plots," according to the Journal.
However, what skills he lacks he makes up for in other departments. Those who know him say he has "a gift with numbers," "a heightened ability to absorb verbal communication," and also, apparently, a strong B.S. detector.
Mr. Cohn also is well-known for being direct, even by Wall Street standards. During the credit crisis, he spotted ex-Goldman executives John Thain and Peter Kraus having dinner at San Pietro restaurant in New York. Mr. Thain now is chief executive of CIT Group Inc., while Mr. Kraus leads AllianceBernstein Holding LP.
"They are a pair of Goldman retreads," Mr. Cohn remarked to his dinner companion, according to people familiar with the conversation.
From the disabled who need help to stay in their homes to school districts trying to balance their own budgets, people who rely on state spending are bracing for Gov. Pat Quinn's budget scalpel.
Quinn said June 28 he's preparing to deal with the proposed spending plan approved by lawmakers last month and that cuts are coming, although he did not specify where they will land.
The only area Quinn identified was "bureaucracy," implying reductions in direct government expenses, such as employee costs. However, Quinn is limited on that front because of an agreement the administration reached earlier this year with the American Federation of State, County and Municipal Employees, the largest of state government’s employee unions.
The union gave up half its scheduled pay raise next year in exchange for a guarantee of no additional layoffs and no further closure of state facilities through June 2011. The Quinn administration said that and other cost-saving moves will save about $200 million.
That doesn’t mean AFSCME isn’t worried about Quinn’s impending cuts.
"We are very concerned that the governor may further reduce funding for community-based human services, local governments or higher education -- areas in which tens of thousands of AFSCME members work to serve their communities all over Illinois," AFSCME spokesman Anders Lindall said in a written statement Tuesday.
That's also a concern of the Service Employees International Union, which represents people who help the elderly and disabled state in their homes.
"What we're hearing is the administration is seriously considering cutting the home care program, cutting hours and cutting people off the program," said SEIU communications director Brynn Siebert. "It costs three times as much to keep a person in an institution as at home."
Tyler McHaley, president of Springfield Area Disability Activists, said he believes cuts to home care are coming.
"We have no reason to believe (Quinn) won't do that," McHaley said as he prepared to lead a group of about two dozen protesters on a march Tuesday from the Capitol to the Executive Mansion. "There may be a chance I won't be able to maintain my home. All the things everyone takes for granted will be cut for us."
Home care workers help with any number of chores, from cooking and cleaning to laundry and personal hygiene.
"I could lose several hours (of assistance) a day, which would really limit my ability to be independent," said Michael Mohr of Sterling, another of the protesters. "I think it's really inappropriate that he's cutting budgets for people who had no control over how the money was spent in the past. They're taking funding away from people who need it most."
Don Moss, a lobbyist who works on behalf of mental health and developmental disabilities organizations, said he's hearing from providers that their contracts with the state to provide services are being cut.
Just as bad, Moss said, is that the state is already way behind on paying money promised in current contracts.
"We will see the roughest year ever," Moss predicted. "Lobbying for people with disabilities, I've never seen it this bad. Everything is a big question mark right now."
Although Quinn promised to protect school funding as much as possible, education interests also are bracing for the worst.
"We've got people who are being laid off who will not be called back," said Charles McBarron of the Illinois Education Association. "It's an extremely stressful time for our members. They have families and children going to college and mortgages. To be put in a situation unfairly and unnecessarily is extremely unsettling."
Dave Comerford of the Illinois Federation of Teachers said any cuts announced by Quinn may not mean much in the end anyway.
"We think this is a budget built on quicksand. Regardless of what numbers they put in the budget book, the funding doesn't exist to fund education at that level," Comerford said.
Ben Schwarm of the Illinois Association of School Boards said the association still hasn't been able to figure out what the proposed budget means for schools, and he doesn't expect that to change after Quinn acts.
"Every area of the budget, there's still question marks," Schwarm said. "Even if they appropriate money, if they don't send payments it doesn't do much good.”
Gov. Pat Quinn’s office said June 29 that the governor will reveal his proposed budget plan on July 1, the first day of the state’s 2011 fiscal year.
Quinn had said earlier that he expected to disclose the budget plan today. The announcement from his office, however, said Quinn has other obligations today.
A new institute for treating children suffering from dyslexia and autism opened doors June 30 in Sofia.
The institute said that seven specialists will be working with the children, including teachers, speech-therapists, clinic psychologists, children neurologist and a psychiatrist. They will also train parents, teachers and pedagogic consultants how to work with kids suffering from dyslexia and autism.
The next step for the newly opened institute will be to provide training for GPs and pediatrics.
The mayor of Sofia, Yordanka Fandakova, and the Bulgarian actor Hristo Mutafchiev have been present at the opening ceremony.
Fandakova has reminded that the first center for working with kids suffering from autism was opened 3 years ago. She has pointed out that there will be a second one soon, in order to increase the capacity of such institutions.
Parents and grandparents who have come to the opening ceremony have complained that they would have to pay BGN 30 per consultation. In their words, the overall support for a child with dyslexia costs more than BGN 250 per month.
“This is not a disease. This is a modification of the two centers of the brain cortex. Einstein was like this, and Agatha Cristie, Tom Cruise, Mozart. The kids see letters differently and experience difficulties with reading and writing,”parents said.
Feds to colleges: If you require students to use electronic-book readers that blind people can't access, you may be running afoul of the law.
That was the message of a letter released to college presidents June 29 by the U.S. Departments of Education and Justice.
"It is unacceptable for universities to use emerging technology without insisting that this technology be accessible to all students," the letter warns.
The move comes after two national organizations representing the blind sued Arizona State University over its use of the Kindle (pictured). The groups had also asked the Justice Department's Civil Rights Division to investigate whether e-book practices at several universities violated the rights of blind students under the Americans With Disabilities Act. In January, a series of agreements were announced in which universities pledged not to use Amazon's Kindle or any similar devices "unless the devices are fully accessible to students who are blind and have low vision."
Of the e-readers produced by four companies—Amazon, Barnes & Noble, Sony, and Apple—only Apple's iPad can be used by blind people, said Chris Danielsen, a spokesman for the National Federation of the Blind.
Amazon had pledged to fix the Kindle's accessibility. The company still has not delivered on that promise, Mr. Danielsen said. The device has a read-aloud feature that converts text to speech. But it lacks an accessible interface that would let blind people find books and start reading them, he said.
"So it's not really actually helpful to a blind person," he said of the text-to-speech feature.
The iPad, by contrast, has technology that can talk a blind person through whatever screen icons their fingers are touching, Mr. Danielsen said. Since the device's debut, several colleges have announced formal campus iPad initiatives.
Mr. Danielsen said he hopes the government's letter will prompt universities to tell the e-reader vendors that approach them that they can't legally use the devices unless they're equally accessible to blind students.
Josie Duggar is finally coming home.
The 19th child of Jim Bob and Michelle Duggar, the Arkansas couple whose enormous family is documented on the TLC series "19 and Counting," spent her first six months of her life in neonatal intensive care.
The pregnancy was dangerous for both mother and child. Michelle Duggar suffered from preeclampsia and gave birth to Josie at only 25 weeks.
"It can be quite dangerous," says Eleni Tsigas, executive director of the Preeclampsia Foundation. "It is the leading cause of maternal death in this country. It's also one of the leading causes of a baby dying, and if not dying, at least being born prematurely, like the Duggars'.
Preeclampsia afflicts between five and eight percent of all pregnancies. In the US, few women die of the condition. But around the world, it contributes to 76,000 maternal and 500,000 infant deaths each year, according to the foundation. Stroke is often the culprit.
"It's very important that women know the warning signs," says Tsigas.
High blood pressure, swelling of the face and hands, sudden weight gain, headaches, vomiting, lower back pain, and changing vision are all signs, but many healthy pregnant women experience them as well, so a doctor must make the diagnosis.
The Duggars say they are now moving from the medical drama to focus on the home drama of managing a family of 19 children.
"It is good to be home," a laughing Michelle Duggar told People. "It is surreal to be here. It was such a long time we were away."
But Dr. Tom Easterling, a professor of maternal fetal medicine at the University of Washington and a high-risk pregnancy specialist who hasn't seen the Duggars, says the family may not out of the woods yet.
"It's still a long road," he says. "Babies that are born at 25 weeks have risk for cerebral palsy, blindness, deafness, and learning disabilities."
And Easterling says if there are problems, they may not appear right away.
"There are babies that seem to have perfect nursery courses that wind up with disabilities and others that struggle that wind up just fine," he says. "They don't really know yet."
For now the Duggars are just happy to be home with their new baby girl, who weighs 9 lbs., 1 oz..
"She has a double chin now," Michelle Duggar told People. "It is so precious."
Manufacturers of handheld devices seem to be more eager to accommodate customers with various disabilities - particularly those with impaired vision.
A recent exhibition sponsored by the Royal National Institute for Blind People (RNIB) - Techshare Mobile in Birmingham - saw a number of producers and service providers displaying technology that aimed to give blind and partially sighted users the same experience as non-disabled people.
Olympus is about to launch a new dictaphone (pictured)- the DM5 - that has been designed in conjunction with the RNIB and the British Dyslexia Association (BDA).
It has 8Gb of internal storage which can accommodate more than 2,000 hours of recording.
Since most people would never need anything like that capacity to store audio memos and the like, the device can also be used as a personal music player.
It also supports the DAISY (Digital Accessible Information System) format which the RNIB uses to encode audio books.
DAISY is also popular among people who have dyslexia, and the DM5 has been designed to meet their needs as well.
"It's intuitively designed so all of the buttons are very tactile and should be very straightforward," said Olympus product specialist, Georgina Knight.
"Once you get into the menu of the device and you scroll down to the different options, you have voice guidance, telling you what area of the device you're in."
Some of the DM5's functions can also be controlled by voice commands: for example holding down a button and then saying "audio diary", takes you to the calendar.
Text files can also be transferred from a computer - the DM5 is PC and Mac compatible - and read aloud.
The DM5 also comes with Olympus's Sonority audio editing software that runs on both PC and Mac.
Perhaps conscious of the iPhone's built-in accessibility features - screen magnifier, screen reader and reverse contrast - Research in Motion (RIM) has introduced a screen reader for its BlackBerry Curve smartphone.
However, unlike Apple's Voiceover and Zoom, which are built into every iPhone, RIM's Oratio software has to be purchased from assistive technology specialists, Humanware.
Although not yet available in the UK, US customers currently have to pay $449 (£300) in addition to the cost of the phone.
So why not build the software into every BlackBerry and offer it at no extra cost?
According to RIM's accessibility product manager, Greg Fields, it is because the two companies are approaching the issue from different perspectives.
"If we had a desktop computer and we already owned a screen reader, there would be a different scenario," he said.
"We are smartphone vendors who don't have a desktop screen reader to port across, so we have to work with assistive technology vendors who have that expertise."
Yet another screen reader model is being trialled by Vodafone.
Their software comes from Barcelona-based assistive technology specialists, Code Factory.
It is already being tested by blind users in Spain, and is a simplified version of Code Factory's Mobile Speak software.
It is designed to run on Nokia smartphones like the N95 that run on the Symbian operating system.
Vodafone Speak will be tried by a focus group of around 30 people and the product is due for launch in March next year.
Ben Brown - Vodafone's corporate responsibility manager - said the company will probably offer the software on a 30 day free trial, after which there will be a small monthly charge of between £2 and £3.
"They [customers] will be able to get hold of the software by texting a short code to a number and then downloading it straight to their handset," he said.
Mr Brown said that retail and call-centre staff will all be trained so that they can support the product, and that Vodafone Speak will target a different type of customer.
"I think the key benefit is for beginners or intermediate users of screen readers," he said.
"We're looking for people who just want the basic functions."
Whatever the business model on offer, what is clear is that disabled people are now being valued as potential customers by big business; a decade ago this simply was not the case.
STATEN ISLAND, N.Y. -- It's a new approach to jurisprudence.
At Staten Island's new Mental Health Court, defendants indicted for nonviolent crimes driven by an underlying mental illness will be given a chance to complete a court-ordered supervised treatment program instead of serving jail time.
Officially opened June 27 in State Supreme Court in St. George, the court will provide mentally ill offenders with access to mental health and social service providers, as well as other services to help them avoid further criminal behavior.
In order to have his or her case considered, a defendant must have been indicted for a felony for an offense related to a persistent and serious mental problem that is treatable with medication. Those charged with DWI, arson, gun possession, sex crimes, homicide or other crimes of violence are not eligible for the mental health court. Most important, the defendant must not be deemed at risk of future dangerous behavior.
A paranoid schizophrenic who hears voices telling him to destroy a neighbor's property, for instance, could be eligible for the new court.
Defendants whose crimes involve a victim may be eligible, but the district attorney can seek the victim's input before deciding whether the case can move to the new court.
With an overburdened criminal justice system returning convicted felons to society after they serve time, "The root cause of their problem is never addressed," said State Supreme Court Justice Philip G. Minardo. "No one takes a look at the reason why this happens."
"We just don't want turnstile justice," Minardo said.
Mental Health Court cases will be presided over by Justices Leonard P. Rienzi and Robert J. Collini. Rienzi will screen the cases initially, and Collini will preside over the defendant's guilty plea, monitored treatment and sentence.
Like the borough's drug treatment court, the new mental health court will temper justice with compassion, District Attorney Daniel M. Donovan said in a statement.
"A larger beneficiary in the long run is society," said Timothy Koller, Staten Island's executive assistant district attorney. Koller stressed that public safety is at the forefront of the court, and eligible defendants will be monitored during treatment, with progress reported to the judge. If the defendant successfully meets the terms and conditions of their court-ordered treatment, he or she could avoid jail time. Defendants must plead guilty to be eligible, and if the conditions are not met, the court will impose the sentence on the top count to which the defendant pleaded guilty.
It's the carrot or the stick, said Assistant District Attorney Paul A. Capofari, treatment or jail.
"Very often, people with mental illness commit crimes because of their illness and not because of criminality," said NAMI Staten Island executive director Linda Wilson. "Once they get into that criminal justice system, it's very hard to get out. This kind of court will help people get the kind of treatment they need and go back into society without going to jail."
"A very large number of our clients have engaged in criminality based a large percentage on circumstances beyond their control," said Paul Battiste of Staten Island Legal Defense Services.
The new court will show them that "there are people out there who desire to help them," and put them in a place where they can get treatment, he said.
SACRAMENTO -- John Sargent, 44, is a former Fairmont Hotel security guard, who stands an imposing 6-feet-2-inches tall. On a blazing hot day on the lawn near the steps of the state Capitol, he choked back tears.
“There is a better way to balance the budget. There are better ways to cut the fat. We are not the fat,” he said. “This is what a civilized society does. It takes care of its most vulnerable.”
In 2005, Sargent contracted shingles. The illness left him permanently blind. He also suffers from vertigo, which makes him chronically dizzy.
Due to his disabilities, he lost his job at the hotel. He had to stop taking classes at San Francisco State University, where he’d been a junior studying film.
Yet he has been able to continue living on his own in his apartment in San Francisco on Eddy between Gough and Laguna with the help of John Yarrington, 68, who cooks, cleans, shops and does laundry for him.
Under the state funded In-Home Supportive Services (IHSS) program, Yarrington, a retired restaurant worker, is paid $11.49 an hour for 62 hours a month to work as Sargent’s caregiver. He also escorts the younger man to doctors’ appointments and gives him foot massages, which help relieve the vertigo.
“I get to have some semblance of a normal life because of his help,” said Sargent, who calls Yarrington “my guardian angel.” Without his help, he fears he’d no longer be able to live on his own.
With Gov. Arnold Schwarzenegger proposing to slash 45 percent of the state's IHSS funding, fear of losing their normal lives sent Sargent, Yarrington and more than 1,100 other low-income disabled and elderly people and their caregivers to Sacramento last Wednesday to lobby for preservation of the program. The day of protest was organized by SEIU-United Healthcare Workers-West, which represents home care workers in 11 counties, including Contra Costa, San Francisco, Marin and Sonoma.
The state’s $19.1 billion budget deficit drove Sargent to Sacramento, along with Ophelia Franklin, 92, of Richmond, who uses a wheelchair, and Lionel Burton, 55, of San Francisco, who hugs his elbows to control the tremors of Parkinson’s disease. All of them fear losing the independence that living at home gives them.
Last week, Bay Area protesters spoke out in defense of IHSS, too. At 3 p.m. on Thursday afternoon, about 20 people, most of them seniors or disabled, gathered outside an Arco gas station in San Jose. They want state legislators to impose a new oil severance tax on companies that extract oil in California to raise revenues in order to prevent the cuts. California is the only oil-producing state in the nation that does not have such a tax.
In Berkeley, a handful of protesters have been camped out since June 22 to protest cuts to IHSS and other services for seniors and the disabled. Pitching tents in the median at Adeline and Russell streets, they’ve dubbed their encampment ArnieVille Tent City in homage to the Hoovervilles of the Great Depression.
Schwarzenegger proposed cutting the state’s contribution to IHHS by $637 million in his revised 2010-2011 budget proposal. The state chips in $1.4 billion of the program’s total $5.6 billion annual budget, which is also supported by county and federal funding.
State legislators haven’t yet taken any action on the program. On June 9, the Conference Committee discussed how to reduce 10 percent of the state’s spending on the program. Republicans favored cutting the budget, while Democrats want to find new sources of federal funding to make up the difference.
“From the day Schwarzenegger was elected, he has targeted this program each and every year for very severe reductions. Last year was the first time the legislature agreed with him,” said Karen Keeslar, executive director of the California Association of Public Authorities for IHSS, a statewide organization of local agencies that provide services under the program. “It’s a very frightening time because our state budget situation is terrible, and with every year there are fewer and fewer options in front of the legislature.”
In the 2009-2010 budget, Sacramento attempted to cut caregivers’ wages and reduce the program’s caseload. Federal district court Judge Claudia Wilkens blocked California from implementing either of those cuts. The state is appealing both cases.
Some debate whether cutting the state’s budget for the program would actually save taxpayers money, and a 2010 analysis by the state’s nonpartisan Legislative Analyst’s Office provides evidence that it might. It all depends on how many people would be forced into nursing homes.
Some clients who lose services would have to enter skilled nursing facilities, which cost on average $50,000 per person. By comparison, the average cost of IHSS is $12,000 per person. There are 448,102 disabled and elderly people receiving care through IHSS from 369,470 caregivers.
California has 1,288 nursing homes, according to the California Department of Public Health, with approximately 139,000 beds. On any given day, Medi-Cal beneficiaries occupy approximately 68 percent of those beds, with many of the others occupied by other clients. If there were to be a sudden influx of former IHSS recipients seeking beds, there likely wouldn’t be enough.
Ironically, the budget crisis has already deepened Sargent’s dependency on the state. In 2008, he was undergoing vocational rehabilitation, learning Braille and computer skills. He was receiving mobility training and re-learning how to cook and clean.
But his rehabilitation was abruptly cut off at the end of 2008. “If it had not been for the budget cuts initially, I could be very close to a career,” he said. “I would love to work.” Instead of subsidizing Sargent’s re-education, the state is now paying Yarrington to do it for him, and the chances of him becoming a taxpayer again anytime soon are slim.
At the state Capitol, Sargent walked holding on to Yarrington’s shoulder with one hand for guidance, the other hand gripping a white cane to help navigate. The pair joined a flood of caregivers and their clients streaming into the Capitol to pass by the closed doors of the governor’s office. Sargent had dictated his story to Yarrington, who wrote it out on a piece of paper to be given to one of the governor’s aides.
The closest Sargent got to the governor or any legislator that day was running his hands over the imposing stature of a California Grizzly, which stands sentinel in front of Schwarzenegger’s office. But other caregivers and their clients at the Capitol met with legislators or their staffers, including state Sen. Leland Yee, and Assembly members Fiona Ma and Tom Ammiano.
With so many other groups also lobbying the legislature right now in hopes of saving programs they care about, Sargent has doubts about the impact of the Sacramento trip.
“I’m sure that they heard us, but whether or not they gave us much credence, just seems doubtful,” he said. “We did garner some attention but maybe not enough to have much of an impact.”
WASHINGTON -- The nation's shifting racial demographics and the growing number of government regulations will force colleges to consider issues of discrimination more broadly than in the past, say higher-education legal experts from across the country who are meeting here this week.
And those trends present a growing challenge to colleges as they seek to balance the shifting needs of students and society against the limited resources of their institutions, they say.
Lawyers representing colleges and private practices that specialize in higher education are here for the annual conference of the National Association of College and University Attorneys, which is marking its 50th anniversary.
That milestone places the association's founding just a few years after the U.S. Supreme Court's landmark 1954 decision, in Brown v. Board of Education, that required colleges and schools to desegregate. And since that ruling, the history of higher-education law has been inextricably linked to the nation's civil-rights movement, said Robert M. O'Neil, director of the Thomas Jefferson Center for the Protection of Free Expression in Charlottesville, Va.
In his speech opening the conference, Mr. O'Neil said racial diversity will be one of the major issues higher education will confront as the nation's nonwhite minority groups grow to constitute a multihued majority.
Other speakers at the conference said colleges are finding new justifications for emphasizing diversity even as they face increasing pressure to ensure equitable treatment not only for those of all races and genders, the traditional measures, but also for those of varying sexual identities and persons with learning disabilities.
"The vision has changed with regards to diversity," said Jonathan Alger, senior vice president and general counsel at Rutgers University. In the past, racial diversity began as a mandate only of civil-rights laws, he said, but now economic experts argue that diversity is necessary for institutional success.
But the demand to meet the needs of a wider spectrum of student types and abilities can bring legal and financial risks to the institutions, Mr. Alger said, in the form of costly, frivolous lawsuits.
Laura Rothstein, a professor at the Louis D. Brandeis School of Law at the University of Louisville, said one expanding group in that spectrum is college students who have had accommodations for learning disabilities in elementary or secondary schools under the federal Individuals with Disabilities Education Act.
Those students arrive at college expecting similar academic accommodations, she said, but the federal law that governs special education does not place the same requirements on postsecondary institutions.
More troubling for the institutions is the growing body of federal regulations under the federal Americans With Disabilities Act, which was first passed in 1990 and then amended in 2008 to expand the meaning of what constitutes a disability.
New requirements under the amended law could expand colleges' obligations to accommodate the use of service animals, such as dogs to help the blind, or even add a wide range of pets that are allowed in campus buildings to provide emotional comfort, Ms. Rothstein said.
Federal officials who spoke to the college lawyers said they are also broadening their views of how to prevent discrimination, in part because of support from President Obama.
After years of shrinking budgets and staff, the U.S. Equal Employment Opportunity Commission, which enforces federal antidiscrimination employment laws, has added 300 staff members, said Stuart J. Ishimaru, a commissioner and former acting chairman of the agency.
President Obama appointed key leaders to the commission with the intention of setting it on a more aggressive mission to root out systemic workplace discrimination, Mr. Ishimaru said.
John L. Wodatch, chief of the Disability Rights Section at the Department of Justice, said that President Obama had encouraged his office with the "message that the civil-rights division was open for business."
In addition to working on new regulations for the disabilities act, the department is looking at issues of accessibility for new learning technologies and online classes, Mr. Wodatch said.
Another important area for higher education is helping veterans who are returning to the classroom with a wide new variety of disabilities, including post-traumatic stress disorder and brain injuries, he said.
Tuesday, June 29, 2010
CHICAGO -- On June 29, Chicago ADAPT and SEIU Health Care Illinois & Indiana led a protest to stop cuts that threaten community-based services, and the independence of people with disabilities and seniors.
The protest started with a rally in Daley Plaza. Before long, 100 disability and senior advocates took to the streets, blocking Randolph and Clark in front of the State of Illinois building, sending a clear message that our communities won't back down until independence is preserved
“The 20th anniversary of the signing of the Americans with Disabilities Act is right around the corner, yet our legislative leaders in Springfield seem bent on setting people with disabilities back 40 years by cutting our most indispensible support services,” said Mike Ervin of Chicago ADAPT, a person with a disability who uses a personal assistant through the Home Services Program.
On June 29, Mike joined more than 100 other disability and senior advocates who rallied in downtown Chicago to protect the independence of people with disabilities and seniors living in their homes with the support of Illinois’ Home Services Program and Community Care Program. The advocates marched up Clark Street to the State of Illinois Building then blocked traffic at Randolph and Clark, demanding Illinois preserve services that enable people with disabilities and seniors to live in their own homes and save money.
The proposed 2011 Illinois State Budget includes cuts that will force people with disabilities and seniors into poverty, out of their homes, and into institutions. On average, institutional care costs three times more than home based care. “It's regressive, it's brutal and it's not even fiscally wise. We will not surrender ourselves to a life of inescapable poverty and institutionalization just because our leaders don't have the courage to demand and pass a responsible budget,” said Ervin.
Under the Department of Human Services Home Services Program, eligible people with disabilities have access to personal assistants. By assisting with day-to-day tasks like cooking, bathing and dressing, personal assistants help people with disabilities live in their own homes. Without adequate personal assistant services, people with disabilities are often forced into institutions.
The current Illinois Budget for 2011 puts service caps on Home Service Hours and also reduces the Asset Limit from $17,500 to $2,000 a year for people eligible for Home Services. With the new service caps, some people with disabilities may lose the support they need to live on their own. The change in asset limit will force new members of the program into poverty.
“As a mother and a home care worker for nearly eight years, I’ve seen the important role home care has in the lives of Illinois families—and how important it is in keeping seniors and people with disabilities independent,” said Flora Johnson, a home care provider through the Home Services Program and a member of SEIU Healthcare Illinois & Indiana. “My son has cerebral palsy. His life depends on the assistance he gets through the state’s home care program. For lawmakers to even consider making deeper cuts to this vital care is heart wrenching.”
The rally was led by the disability rights group Chicago ADAPT and by home care workers represented by SEIU Healthcare Illinois, with support from Access Living, Jane Addams Senior Caucus and Progress Center for Independent Living.
In addition to service caps and asset limits, the current Illinois budget includes cuts the to Community Care program, which helps senior citizens live in their own homes. On average, cuts in the proposed budget will mean a 20% cut in hours of care for seniors, and reducing eligibility for home care by lowering the asset limit. The cuts will impact 50,000 seniors statewide.
Blocking traffic in front of the State of Illinois Building, disability and senior advocates demonstrated that State cuts will result in increased unemployment, higher rates of unnecessary institutionalization, and the loss of jobs for personal assistants and home care workers, all of which will cost the state more money. For months, people with disabilities, seniors and the rest of Illinois have been waiting for leadership that will strengthen the state financially and will empower thousands of citizens in Illinois with independence. As long as the State leadership continues to make cuts that don't make fiscal sense and are at the expense of the freedom of people with disabilities and seniors, the communities will continue to fight back.
Nineteen-yea-old student Róisín De Búrca (pictured) has had a busy year. One of the few people in Ireland with Down syndrome to have completed a full Leaving Certificate last summer, she then became part of an even smaller group by proceeding on to further education. On top of that, De Búrca recently won Bank of Scotland’s student of the year award. “I felt proud of myself, something I can accomplish in life, something that belongs to me alone instead of the family,” she says.
De Búrca has just finished a Fetac Level 5 course in Business Administration at Galway Technical Institute (GTI). She chose this course because: “I wanted to see how the business environment worked and wanted to see if it was the subject I wanted to get into.” As a native Irish speaker, she spent two weeks on work experience in the office of an Irish-speaking creche, based in Muintearas in Leitir Mór. “It was easier working there because everyone knew me there and I was able to communicate through Irish because it is an Irish-speaking organisation,” De Búrca explains.
This work experience involved administrative functions, counting cash and bagging it for lodgements, filling in forms, including menus and Garda clearance forms.
De Búrca has a confident, easy going personality and loves creative writing, a pursuit she devotes much of her spare time to. “I usually write about love and death. I just want to do something to take my mind off things. Now, I am hoping to do a script for a play,” she says. “My favourite novel is Twilight by Stephanie Meyer. I just love vampire novels, that is what I am trying to do with my book to bring vampires in as a plot towards the start.”
English and Irish were her favourite subjects in school, and she mentions her particular love of Shakespeare’s Romeo and Juliet , King Lear and Macbeth .
She also has a keen – and varied – interest in music, listing favourites including Luke Kelly and the Dubliners; sean-nós singers including Nan Tom Teaimín; Irish country singer John Beag; popstar Hannah Montana; and folk giants Joan Baez and Bob Dylan.
The considerable support De Búrca received helped open the world for her and has enabled her to live independently, says her mother, Eileen Kenny. “It is very important that people with disabilities get the help they need.
“Róisín’s level of achievement is exceptionally high, and that’s partly because of the level of opportunity she got. If she had never been put in for the Junior Cert, then she wouldn’t have achieved it. Likewise, the school could have put her in for the Leaving Cert Applied only, but they didn’t; they offered her the full Leaving Cert. Children with disabilities are often as much handicapped by the low expectations of their carers and those around them as they are by their disabling condition. Roisin has been lucky.
“The opportunities always came from the school. Anyone that did help her – teachers and the education psychologist – have always been impressed by her abilities. She had to work harder than average to achieve the same result, so she was very tired at the end of the day. She is very diligent and hardworking, so she was prepared to put in the necessary time.”
De Búrca’s secondary school principal, Máire de Bhaldraithe, says, “Róisín had drive and enthusiasm for learning from day one in Scoil Chuimsitheach Chiaráin. Her confidence and single mindedness won the hearts of her fellow students and of the staff.”
Gráinne Murphy, independence officer with Down Syndrome Ireland (DSI), notes that De Búrca’s achievement broke new ground because she did “a full Leaving Cert and passed six subjects”.
“She would have been in the minority of people with Down syndrome in her age group to attend secondary school.”
From a family of five brothers and one sister, De Búrca credits the support of her family with helping her on her journey through mainstream education.
Of her move away from the family home, she says: “Once you get into the rhythm of living in Galway away from your parents, I found it relaxing. There is a great student life here.”
It is vital to have support systems in place for people with Down syndrome, DSI president Claire Leonard says. “I would be very much in favour and I would always encourage parents to try mainstreaming, but if the classes are very big and if they do not get enough support, then they are going to get lost in the system,” she adds.
“The earlier you get stimulation and the earlier you get intervention going, the better their prospects for later on.”
There are far fewer people with Down syndrome going into secondary school than primary school, Leonard, says. “I think a lot of them going would tend to veer towards special schools at that stage,” she explains.
For the student of the year award, De Búrca won a €1,000 scholarship from Bank of Scotland Ireland.
Explaining the reasons the bank selected De Búrca for the scholarship, Rhona O’Connor, charity manager for Bank of Scotland says: “I met Róisín at the Down Syndrome World Conference in Royal Hospital Kilmainham last August where I was terribly impressed by her achievements and personality. She was not bigheaded and was modest in her success.”
“I was very proud of her,” her mother Eileen says, “particularly as it was not an award restricted to people with disabilities. I was glad that the amount of effort she had put in was acknowledged.
“I also feel that Róisín is breaking new ground for people with Down syndrome and therefore increasing the opportunities for people who are younger than she is.”
According to the National Institute on Deafness and other Communication Disorders, roughly two to three children out of 1,000 are born deaf or hard of hearing.
Both of author Jennifer Rosner’s daughters became part of those statistics when they were born deaf. After the birth of her first deaf daughter, Sophia, doctors told Jennifer Rosner the likelihood of her second child having the same disorder was rare. Little Juliet proved them wrong.
“I started writing [If a Tree Falls] initially because I was trying to process what was happening,” Rosner said. “I had experienced a lot of grief over the loss but also joy.”
Before becoming an author and a mother, Rosner received a B.A. in philosophy from Columbia University and then a Ph.D. in philosophy from Stanford. Rosner will read from If A Tree Falls at 7 p.m. today in Prairie Lights Books, 15 S. Dubuque St.
The book chronicles the author’s experience working with her deaf daughters and discovering a hidden ancestry line of deaf women in her family that can be traced all the way to Europe. Rosner’s book also details what some would consider controversial decisions she and her husband had to make about surgeries, sign language, and hearing aids.
“One reason we wanted to host Jennifer is because she’s a longtime participant in the Iowa Writing Festival,” Prairie Lights co-owner Jan Weissmiller said. “It’s more unusual to have someone who actually took classes while she was working on her book.”
While uncovering details from deaf women in her family line, the East Coast native learned specifically about two deaf family members who lived in the 1800s. Rosner’s great-great aunts tied one end of a string to the wrist of their babies and the other end to themselves so that when their babies woke up in the night, they could feel the tugging and be able to tend to them.
“That detail showed the connection and the different ways of hearing,” Rosner said. “There were fears about my children’s hearing but also a more complicated fear about my hearing them.”
As Rosner delved further into the story behind her daughters’ hereditary deafness, she uncovered a hidden world of deaf family members. A copy of a family tree that her father gave her showed a large number of ancestors who had experienced deafness or some sort of hearing loss. But the author needed more information.
“I didn’t find how they lived, which was what I was most hungry for,” she said. “I just needed to know how they lived.”
The lack of information prompted her to imagine what it would have been like for her ancestors in the early 19th century to deal with deafness and combine it with “contemporary memoirs” of having to raise two deaf daughters.
“That process, for me, was like a projection screen for all that I was carrying for my own children — fears, worries about isolation, and hope,” Rosner said. “[I was also] trying to grapple with my own issues as a child, which was affecting my experience with having deaf kids.”
Weissmiller is excited to bring Rosner to Prairie Lights and is even more excited to help people learn about the issues If a Tree Falls deals with.
“We like to have a certain number of readers who [can have an open discussion about] disabilities, and we’re looking forward to the reading,” she said
The health needs of tens of millions of aging baby boomers threaten to overwhelm the nation’s hospitals and caregivers within a decade or two, but the geriatric tidal wave does not appear to have been fully recognized at the National Institutes of Health.
The N.I.H., the nation’s main medical research center, is devoting only about 11 percent of its $31 billion budget to studies directly involving health concerns of the elderly. Less than one-third of the $3.46 billion in aging research reported this fiscal year is channeled through the National Institute on Aging, nominally the main center for geriatric research.
Most of the funds, including some involving Alzheimer’s disease, Parkinson’s and osteoporosis, came through other N.I.H. institutes.
Aging is just one of a half dozen “compelling” opportunities for important scientific advances, said Dr. Francis S. Collins, director of the national institutes. “Aging is very much on our radar screen.” he said. “So, of course, is diabetes, so is cancer, so is mental illness, so is research on children, autism.”
Although there has been moderate growth in spending at all 27 N.I.H. research centers, the growth is slower at the National Institute on Aging. President Obama has proposed adding $1 billion, or 3.2 percent, to the N.I.H. in the 2011 fiscal year; the aging institute’s share would rise 2.9 percent.
Funds are already “a little more constrained than last year,” said Dr. Marie A. Bernard, deputy director of the aging institute. The squeeze shows up in the number of projects financed after having been approved by scientific reviewers.
Last year, 17.5 percent of aging institute grants were approved, compared with 20 percent approved for N.I.H. as a whole, she said. Aging research approvals are expected to drop even more, to 13 to 14 percent, when the 2010 numbers are announced, said Nancy E. Lundebjerg, chief operating officer of the American Geriatrics Society, an advocacy group.
Dr. Collins said “it would be unfortunate for advocates for aging research to make the case that aging should take away funds from those studying heart disease or diabetes,” which are relevant to aging. “What we need is a rising tide to lift all the boats,” he said.
Twenty-one Senate Democrats, led by Senator Bob Casey of Pennsylvania, have asked the Senate Appropriations Committee to raise the N.I.H. 2011 budget 11.9 percent, to $35 billion.
The Supreme Court has begun hearing an appeal by a young autistic boy against the High Court’s refusal to compel the State to provide funding into the future for a specific form of education for him.
In what was regarded as a test case for autistic children seeking education according to the system of Applied Behavioural Analysis (ABA), Seán Ó Cuanacháin (10), suing through his father Cian, of Woodbine Avenue, Mountain View, Arklow, Co Wicklow, had sought orders compelling the State to provide funding for education according to ABA.
The case ran for almost 70 days in the High Court, incurring costs estimated at about €5 million.
In his judgment in 2007, Mr Justice Michael Peart ruled the programme of education being provided by the State for Seán – an eclectic and Model A programme – was “appropriate autism-specific educational provision” and, in those circumstances, declined to make orders requiring the State to fund an ABA programme.
The court heard yesterday Seán was now receiving education according to the ABA method and the State was providing funding for that.
His parents contend the State is required to provide such funding into the future.
Paul Sreenan SC, for the child, said the appeal relates to the past failure by the defendants to discharge various duties to Seán, such as speech and language therapies, and for the future provision of ABA education and appropriate therapies for the boy.
The Supreme Court – comprising Chief Justice John Murray, Mrs Justice Susan Denham, Mr Justice Adrian Hardiman, Mr Justice Nial Fennelly and Mrs Justice Fidelma Macken – on hearing that the State was funding ABA for Seán, asked if the central issue in the appeal was therefore moot. The court has invited both sides to make submissions on that matter when the case resumes today.
Mr Sreenan said the State had initially refused to provide funding for ABA for Seán and instead proposed to provide for his continued education on the basis of an eclectic model.
Seán is now receiving State funding for ABA and his parents’ “clear preference” was for him to continue to be educated through the ABA method, counsel said.
Counsel argued the High Court had erred in holding the eclectic method was appropriate for Seán and also erred in failing to consider the failure by the State to provide Seán with ABA breached provisions of the European Convention on Human Rights.
While the High Court had awarded damages to Seán against the Health Service Executive (HSE), damages also ought to have been awarded against the State over its failure in its constitutional and statutory duties towards Seán, Mr Sreenan also argued.
Mr Justice Peart had awarded Seán almost €61,000 damages against the HSE because of “unreasonable” delay in diagnosing his condition and in providing appropriate therapies to him. The HSE has cross-appealed that ruling to the Supreme Court.
The State was liable for the failure to provide an education appropriate to Seán’s needs following his diagnosis, counsel said. That failure occurred during the 27 months between December 2002, when Seán was diagnosed, to February 2005 when his full-time placement was sanctioned.
Mr Sreenan also argued the High Court had ignored the issue of the parents’ choice for their son to be educated through the ABA method, he said.
There's a Laketran bus stop in front of Mary Ricketti's (pictured) Willoughby apartment building, but she never used it.
Instead, for more than 20 years, the mentally disabled woman has called Laketran to schedule door-to-door service because she was unsure about how to take a regular bus to her destination.
She knows now. Julia Schick (pictured) showed her.
Schick is Laketran's travel trainer, a job relatively new to transit agencies. Trainers help the elderly and people with disabilities become less dependent on dial-a-ride services by learning how to navigate fixed bus routes.
"People think because they have a disability they don't have the right to do things independently," said Shanices Chambers-Robinson, travel trainer for the Greater Cleveland Regional Transit Authority. "They feel intimidated, scared or just give up."
Ricketti, 47, recently rode a bus to Wal-Mart in Eastlake with Schick. On Wednesday they went to the Great Lakes Mall in Mentor.
"If I could ride a route bus I'd have more freedom," said Ricketti as she double-checked with Schick to make sure she was catching the correct bus and had a fare card. "I depend on Laketran for everything."
Chambers-Robinson and Schick acknowledge that some people with severe disabilities may not be able to walk to a bus stop or from the bus to their destination. But the travel trainers say many current dial-a-ride passengers could gain more freedom by riding a route bus instead of having to schedule their trips at least a day in advance.
Travel trainers spend hours with their clients to overcome fears of not catching the right bus, getting lost and not knowing who to ask for help.
Schick has helped Ricketti become so confident about riding a bus that as they rode home from the mall, Ricketti mentioned other places she would like to go -- downtown Willoughby and her mother's house in Wickliffe.
Some social service agencies, such as the Cuyahoga County Board of Developmental Disabilities, have provided travel trainer services for decades, generally to help clients use public transit to get to work.
Transit agencies began hiring travel trainers after the Federal Transit Administration started its New Freedom program in 2008 and offered grants for agencies to provide transportation services beyond those required by the Americans with Disabilities Act.
Schick, who had worked in community outreach with Laketran since 2005, developed the first travel trainer program in the area. Transit agencies in Cuyahoga, Portage and Summit counties have included elements in their programs. Trainers from the four agencies meet regularly to share ideas and coordinate travel across county lines.
Individuals must be referred to travel trainers through the transit customer service center, county social service agencies or other agencies.
The client sets goals on where and when he or she would like to travel. The trainer then conducts a physical and mental assessment to see if the person can ride a regular bus. If a route fits their needs, the trainer makes sure there are no physical barriers that would prevent the rider from getting to the bus stop or from the bus to the destination.
The trainer and client thoroughly discuss all aspects of the trip, including the need to carry identification and emergency phone numbers, bring a water bottle if it is hot, how to be safe and how to trust the bus driver.
The trainer goes with the person on as many trips as necessary until he or she feels comfortable enough to travel alone. The trainer may later "shadow" clients to make sure they travel safely.
In 2009, Schick helped 26 individuals and 310 youths and adults in classes. Chambers-Robinson, who started her program in the spring of 2009, has helped 107 people in group and individual training. She has 70 on a waiting list and RTA recently hired a second travel trainer with a New Freedom grant.
Last winter, Chambers-Robinson offered six half- or full-day sessions for students with behavioral and other disabilities to several middle and high schools. That program is expanding this fall to other districts, including Cleveland.
After the last session, the students plan a trip. A class from Educational Alternatives in Strongsville went to Westfield SouthPark Mall for lunch, which required a bus transfer, Chambers-Robinson said.
"The students loved it," she said. "It was a celebration of everything they had learned."
Many of the students at the Cuyahoga Valley Career Center in Brecksville who took Chambers-Robinson's class this year had never been on a bus, said Loreen Dorin, assistant principal for special needs.
"To have an awareness of how to travel safely on public transportation is a great opportunity," she said.
With a nudge from the new health care law and pressure from Medicare, hospitals, doctors and nurses are struggling to prepare for explosive growth in the numbers of high-risk elderly patients.
More than 40 percent of adult patients in acute care hospital beds are 65 or older. Seventy million Americans will have turned 65 by 2030. They include the 85-and-older cohort, the nation’s fastest-growing age group.
Elderly people often have multiple chronic illnesses, expensive to treat, and they are apt to require costly hospital readmissions, sometimes as often as 10 times in a single year.
The Obama administration is spending $500 million from last year’s stimulus package to support the training of doctors and nurses and other health care providers at all levels, “from college teachers through work force professionals on the front lines of patient care,” said Kathleen Sebelius, the secretary of health and human services.
But the administration and Congress seem to be paying less attention to geriatric health issues. For example, only 11 percent of research funding at the National Institutes of Health went to aging research last year.
“In every area of aging — education, clinical care, research — people just don’t realize how dire the situation is,” said Dr. David B. Reuben, chief of the geriatrics division of the David Geffen School of Medicine at the University of California, Los Angeles.
Dr. Judith Salerno, a geriatrician who is executive officer of the Institute of Medicine in Washington, agreed. “All the most common causes of death and illness and functional impairment in the general population are diseases of aging,” she said.
At N.I.H., the director, Dr. Francis S. Collins, sees the picture in different terms. He says N.I.H. budgets are tight across the board, not just for aging research, after a $10 billion spike from stimulus funds.
“The opportunities in aging research are compelling,” Dr. Collins said in a telephone interview. He mentioned a study last year on mice that lived significantly longer after being given rapamycin, a cancer and immunosuppressive drug.
“That is turning out to be the most exciting new pathway for extending normal life span that has ever been discovered,” Dr. Collins said. But he said the opportunities were also compelling in cancer, diabetes, mental illness and autism.
“It is frustrating to have such great opportunities and limited budget resources,” Dr. Collins said. They all need more funds, he added.
In hospitals and doctors’ offices, where explaining to elderly patients how to deal with their often-complicated problems can be time-consuming, payments from Medicare, Medicaid and most private insurers are not sufficient, said Dr. J. Fred Ralston Jr., president of the 129,000-member American College of Physicians.
“The payment system doesn’t finance the kind of resources we need to take care of the 20 percent of Medicare patients who use 80 percent of resources,” he said.
Dr. Mark R. Chassin, a former New York State health commissioner, said, “The biggest challenge that we face with the increasing numbers of very elderly folks is how to preserve as much independence in their lives as possible.” Dr. Chassin heads the Joint Commission, which accredits thousands of hospitals and other health care providers.
To stay independent, the elderly will need to stay healthy.
“Many of these people could be back on the golf course and enjoying their grandchildren if we did the right thing for them,” said Mary D. Naylor, a longtime geriatric care researcher and professor of gerontology in the School of Nursing at the University of Pennsylvania.
Her research showed that even fragile older people could avoid a quick return to the hospital if they are managed by teams of nurses, social workers, physicians and therapists, together with their own family members. Hospital readmissions, which cost $17 billion a year, could be reduced by 20 percent — $3.5 billion — or more, she said.
Hospitals will be penalized by cuts in their Medicare payments, starting in 2012, if too many patients are readmitted within 30 days after being discharged.
Dr. Reuben at U.C.L.A. said research showed that “vulnerable elderly people who are at risk of becoming frail often do not get appropriate care. For dementia, falls, bladder incontinence, depression, they get about a third of the care they need.”
He added: “If somebody is falling, it makes sense to examine their gait and their balance. If someone has bladder incontinence, you might want to have them do exercises, but their doctors commonly reach for the next drug they can give them.”
Hospitals are training their staffs to make special assessments of patients who may be at risk of falling, a major threat for the elderly. A fall-prevention program is a requirement for Joint Commission accreditation.
Many internists, family physicians and other primary care doctors are lobbying for payments for a team approach based in the physician’s office. The concept, which they call a patient-centered medical home, will be tried out under the new health care law by Medicare, Medicaid and some private insurers. Secretary Sebelius has called the medical home idea “one of our most promising models for improving the quality of care and bringing down health care costs.”
Geraldine Goldsmith, a patient at New York University’s Langone Medical Center, said a team of N.Y.U. geriatric care specialists “taught me how to survive” during her long fight against sickle cell anemia, a genetic blood disorder.
To stave off a painful sickle cell crisis, which may put her in the hospital as often as every six weeks, Ms. Goldsmith, who is 73, gets continuous support from Marilyn Lopez, a geriatric nurse practitioner.
Caring for the elderly is “a profession of the heart,” Ms. Lopez said.
Ms. Goldsmith said the geriatric team “makes sure that I eat proper food, take my medications, keep my appointments — as you get older, you forget.”
She added that Ms. Lopez “calls and says: ‘Geraldine, look at your calendar. I’m going to see you tomorrow.’ ”
At the N.Y.U. medical center, an electronic screening system tracks patients who may be at risk for problems with cognition, falls, nutrition, pain, skin conditions like pressure ulcers, and taking multiple medications, Ms. Lopez said. Similarly, at the University of Alabama Hospital at Birmingham, Susan B. Powell, a nurse practitioner, sees to it that medications prescribed for older patients are checked by a pharmacist against a list of drugs found to be unsafe for the elderly. So many of these patients are seeing six or eight doctors and end up with many prescriptions, Ms. Powell said.
After elderly patients are sent home, she telephones to remind them to contact a physician and to follow orders from their nurses and doctors.
Both hospitals use a precise set of methods and principles for geriatric care called Niche (for Nurses Improving Care for Healthsystem Elders). With support from the John A. Hartford Foundation and the Atlantic Philanthropies, the Niche program has spread to 300 hospitals around the country.
Although the recession has made finding jobs difficult for recent nursing graduates in places like New York and California, the Labor Department has said that 600,000 new nurses would be needed within 10 years to replace those who retire and to meet growing demand.
Currently, 11,000 of the nation’s 3.1 million registered nurses are certified as geriatric nurses or nurse practitioners. But tens of thousands of student nurses are now learning about the special needs of the elderly as part of their regular studies, said Geraldine Bednash, chief executive of the American Association of Colleges of Nursing.
Every student nurse at N.Y.U. spends time working with elderly patients. “Before long, 90 percent of American nurses will have to provide care for older adults,” said Terry Fulmer, dean of the N.Y.U. College of Nursing. Ms. Fulmer helped create and develop the Niche approach.
This year, the National Health Service Corps, a unit of the Department of Health and Human Services, is doubling its program that repays student loans for caregivers who work in rural and underserved urban neighborhoods. Family practice doctors, nurse practitioners, dentists and others who care for the elderly are among those eligible. The administration has allocated $300 million in stimulus funds to support about 7,800 graduates.
With stimulus money and $34 million more under the new health care law, the administration is also expanding training for geriatric specialists who commit to teaching student physicians and nurses.
“As we talk about needing more health care providers of all kinds,” Ms. Sebelius said in a telephone interview, “we are also retraining current providers” to become better at geriatric care.
But doctors are generally not paid extra for the time they spend in lengthy meetings listening to elderly patients with multiple problems. “Geriatricians work in one of the few fields where the more you know, the less you are paid,” said Dr. Salerno of the Institute of Medicine.
Not surprisingly, specialists in geriatric care are in short supply. There are only about 7,000 geriatricians to deal with the aging boomer generation over the next 10 years, Dr. Reuben said. More than 20,000 will be needed, according to the American Geriatrics Society, a professional and advocacy group. To help fill that gap, all first-year interns in internal medicine at the Birmingham medical school are spending four weeks with geriatric patients this year. They are part of a $200 million national effort to promote geriatric education principally financed by the Donald W. Reynolds Foundation, based in Las Vegas.
Dr. Kellie Flood, a geriatrician who directs the Birmingham program, discusses newly admitted elderly patients at 10 a.m. daily with Ms. Powell and other nurses and doctors, as well as therapists, dietitians and social workers.
“We start planning for their departure from Day 1,” Dr. Flood said. By some counts, her geriatrics unit outperforms comparable general medical units in the hospital. “We have a lower average length of stay — four days — and a lower 30-day return rate — 16 percent,” she said. The national average is close to 20 percent for Medicare patients discharged from a hospital and readmitted within a month.
Dr. Flood, Ms. Powell and their team have a fan in William Mullins, 88, a retired pharmacist who lives in nearby Pelham, Ala. Mr. Mullins, who had a small stroke in April, praised the “great care” at Birmingham. “They treated me,” he said, “like they was my daddy or my mother.”