AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Thursday, 17 October 2013
NATIONAL
Shutdown Over, Government Slowly Gets Back to Normal. The New York Times (10/17) (Michael D. Shear)
WASHINGTON — The United States government sputtered back to life Thursday morning after President Obama and Congress ended a 16-day shutdown, clearing the way for federal agencies to again deliver services, reopen public facilities and welcome hundreds of thousands of furloughed employees returning to work.
The political standoff in the nation’s capital ended just minutes before a midnight deadline when the government’s ability to borrow money would have expired. Republicans conceded defeat on Wednesday by agreeing to finance the operations of government until Jan. 15 and raise the nation’s debt limit through the middle of February. The Senate passed the legislation first, and the House followed around 10:15 p.m.
The agreement paves the way for another series of budget negotiations in the weeks ahead, even as conservative Republicans in the House and Senate vowed to renew their fight for cuts in spending and changes to the Affordable Care Act.
Just hours after Mr. Obama signed the temporary spending measure into law around 12:30 a.m., agencies in Washington and across the country prepared to reopen offices, public parks, research projects and community programs that have been mothballed for more than two weeks. The government’s top personnel officer announced that officials should restart normal functions “in a prompt and orderly manner.”
In Washington, the city’s subway trains were once again packed with federal workers streaming in from the suburbs, government IDs dangling from lanyards around their necks. At the Lincoln Memorial, tourists waited nearby as a park ranger cut down the signs announcing that the memorial was closed.
Robert Lagana said Thursday morning he was eager to get back to his job at the International Trade Commission.
“It beats climbing the walls, wondering where your next paycheck is going to be and how you’re going to make your bills,” Mr. Lagana said as he made his way to his office near L’Enfant Plaza.
But he also expressed frustration with lawmakers who held up the budget over the new health care law. “They really need to come up with a law where this never happens again,” he said, adding later, “You just feel like you don’t have a voice.”
At the Environmental Protection Agency headquarters in Washington, Vice President Joseph R. Biden Jr. showed up to see workers who had been furloughed.
“I brought some muffins!” Mr. Biden said as he arrived at the security desk. When he was asked about the shutdown, he said: “I’m happy it’s ended. It was unnecessary to begin with. I’m happy it’s ended.”
He greeted returning workers with handshakes and hugs.
The Smithsonian Institution announced via Twitter that its museums would reopen to the public on Thursday. The National Zoo’s popular “Panda Cam” was once again broadcasting live streams of the zoo’s newest panda cub by late Thursday morning, and officials said that the zoo would be open to visitors on Friday.
But how quickly other parts of the government will resume normal operations was not immediately clear.
Some federal agencies began offering employees guidance for their return to work. A memorandum from officials at the Department of the Interior encouraged returning workers to check their e-mail and voicemail, fill out their timecards and to “check on any refrigerators and throw out any perished food.”
The Interior memo hinted at how long it will take for the government to be fully functioning. It said snack bars at the main Interior building would be open on Thursday, but the cafeteria would be closed. Shuttles between Interior buildings in the capital will not be operating, the memorandum said.
Across the country, federal workers returned to work, and visitors returned to national historic sites.
In New York City, office workers poured in and out of the mammoth building at 26 Federal Plaza in Lower Manhattan on Thursday morning; some had been essential staff who worked through the shutdown, while others were eager to get back to the job – and start being paid again.
“Put yourself in that situation,” said Regina Napoli, 60, a legal administrator for the Social Security Administration who lives on Long Island. “The bills pile up.”
Her colleague, Selma Chan, 64, agreed. “We were feeling the strain financially and physically,” said Ms. Chan, whose younger daughter is a student at New York University. “We didn’t know what to do.”
Ms. Chan said she had mostly stayed at home in Flushing, Queens, and had contemplated borrowing money from her elderly mother to make ends meet. But on Thursday, she was beaming as she held up a brown paper bag with a latte and a grilled cheese sandwich – an indulgence she said was not possible the day before.
Across the street at the African Burial Ground National Monument, a tiny federal park, French middle school students huddled for a talk by a Long Island University professor. (The smallest national park in New York City, a three-story Manhattan brownstone housing the Theodore Roosevelt Birthplace Historic Site, also reopened on Thursday.)
The burial ground site, which draws casual office workers and daily visitors who come to pray, had reopened an hour before. And within minutes, the park ranger in charge said, a group from West Africa arrived, including dignitaries from Benin.
Tourists in Boston spilled into the Charlestown Navy Yard, the national historic park that contains the U.S.S. Constitution, the world’s oldest commissioned warship afloat. Some arrived on foot and others eagerly disembarked from trolleys that, during the shutdown, brought visitors past the park but could not take them inside.
“I was hoping it would be open; we didn’t know whether it would be in time,” said Dorothy Bank, a retired kindergarten teacher from North Carolina who was just about to leave Boston for a foliage tour in Northern New England.
Sean Hennessey, a spokesperson for the National Parks Service, said 85 furloughed employees were back to work in Boston on Thursday. He estimated the city’s national historical sites,which include the Navy Yard, the Bunker Hill Monument and the downtown Faneuil Hall visitor center, lost about 55,000 visitors because of the shutdown. The U.S.S. Constitution Museum alone, he said, lost an estimated $7,000 per day.
For much of the week in Oak Ridge, Tenn., the restaurant owner Waldek Kaczocha saw Thursday as a day of dual threats: the breach of the debt ceiling and, perhaps more critically in this East Tennessee city, the start of furloughs for about 3,600 employees at the Y-12 National Security Complex.
For weeks, Y-12, which helps to manage and maintain the nation’s nuclear arsenal, had remained open as its private operator used carryover funds. But as those dollars dwindled, officials warned that Oct. 17 – more than two weeks into the broader government shutdown – would be the first forced day off for thousands of employees.
“I was really, really scared. If they don’t have their jobs, I have no customers,” said Mr. Kaczocha, who said federal employees and contractors make up 80 percent of his restaurant’s customers. “I was really worried about the whole mess.”
To prepare for a drop in business and grow his contingency fund, he canceled his plans for a springtime family vacation.
Across Jackson Square in Oak Ridge, Dean Russell said he had no plans to do away with the sign he posted at the entrance of his restaurant on Wednesday: “Members of Congress not welcome here.”
Even in deeply conservative Tennessee, Mr. Russell said his edict applied to members from both parties, who are now barred from the restaurant’s selection of apple, chocolate and coconut fried pies.
And he said that even when he removes the display, he will keep it close at hand. “I’m sure the anger will pass, and I’ll take it down,” Mr. Russell said. “But we’ll keep the sign because I’m sure they’ll do something again.”
Government workers in Chicago streamed into the John C. Kluczynski Federal Building Thursday morning. Many, clutching takeout coffee, said they expected a daunting backlog of work.
One employee of the labor department, who would give only her first name, Lyn, because her employer would disapprove of her talking about the shutdown, said she was relieved to be back. “I live paycheck to paycheck,” she said, adding that she also supports her 84-year-old mother. “It was stressful.”
She now fears it could take weeks for back pay to get approved. “We didn’t ask for this,” she said. “We’re just the little guys. At least things are getting back to normal.”
But not all was back to normal. People who had been waiting to visit the Internal Revenue Service office since the shutdown began were still turned away by security. “If you aren’t making a payment, they won’t see you,” said an officer in the lobby, who suggested they try again tomorrow.
Cynthia Ellis, a South Side resident, needed to get federal tax documents for a state program that helps pay her mortgage. “I heard the news say all government employees are back to work,” she said, clearly frustrated. “This is bad. This is really bad.”
Ms. Ellis said the documents needed to be turned in by Friday or she could lose the financial aid. “It’s already due,” she said about her house payments. “I’m already behind.”
Across the globe, investors shrugged at the decision by United States politicians to end the shutdown. European stocks dipped on Thursday as investors appeared more interested in other corporate news than the political drama playing out in Washington.
The euro zone’s blue-chip Euro Stoxx 50 index was down 0.4 percent in afternoon trading, retreating from a 2-1/2 year high hit on Wednesday. Futures trading on the Dow Jones industrial average indicated a mild pullback after a 1.4 percent gain on Wednesday.
“People are ‘selling the news,'” said David Thebault, head of quantitative sales trading at Global Equities. “The agreement was priced in stocks, and now that it’s behind us and political risk has been removed, investors are offloading portfolio protection.”
Financial officials in the United States expressed deep skepticism about the likelihood that the parties in Washington would reach a better outcome as they seek a broader budget deal by the end of the year.
Richard Fisher, the president of the Dallas Federal Reserve, told the Reuters news agency that the country would not get unemployment under control unless lawmakers and the president “get their act together.” A longtime critic of the Fed’s efforts to buy bonds to stimulate the economy, Mr. Fisher said that a long-term solution was unclear.
“Kicking the can down the road for a few months will not solve the pathology of fiscal misfeasance that undermines our economy and threatens our future,” Mr. Fisher said, adding that the Fed’s stimulus cannot “offset the rot that is destroying our fiscal house and the blight it spreads over our economy.”
In Washington, politicians immediately began the post-shutdown posturing as they braced for another confrontation over spending, taxes and health care in the budget negotiations that are set to begin in the days and weeks ahead.
Senator John McCain, Republican of Arizona, urged his party colleagues to make sure that those talks did not lead to another high-stakes battle that put the government at risk again.
“We’ve got to assure the American people that we are not going to do this again,” Mr. McCain said on MSNBC’s “Morning Joe” on Thursday. He said Republicans should “focus on the provisions of Obamacare that are not acceptable” and make sure they get “a positive agenda for the party so we can be for things rather than against things, for opening things rather than closing them.”
Tea Party conservatives insisted that the fight that led to the shutdown was not a wasted effort, even though they were not able to defund or delay the president’s health care law.
“We fought for fairness,” said Representative Mick Mulvaney, Republican of South Carolina, on CNN’s “New Day” program. “If you stand up for what you believe in, I think you will always find yourself on the right side of things.”
“Sometimes,” he added, “this is the only way.”
<img src="http://meter-svc.nytimes.com/meter.gif"/>
Reporting was contributed by Jess Bidgood from Boston; Alan Blinder from Oak Ridge, Tenn.; J. David Goodman from New York; Emmarie Huetteman from Washington; and Steven Yaccino from Chicago.
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Presidential Proclamation -- Blind Americans Equality Day, 2013. The White House (10/11)
Presidential Proclamation -- Blind Americans Equality Day, 2013
BLIND AMERICANS EQUALITY DAY, 2013
- - - - - - -
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION
Blind and visually impaired persons have always played an important role in American life and culture, and today we recommit to our goals of full access and opportunity. Whether sprinting across finish lines, leading innovation in business and government, or creating powerful music and art, blind and visually impaired Americans imagine and pursue ideas and goals that move our country forward. As a Nation, it is our task to ensure they can always access the tools and support they need to turn those ideas and goals into realities.
My Administration is committed to advancing opportunity for people with disabilities through the Americans with Disabilities Act and other important avenues. In June of this year, the United States joined with over 150 countries in approving a landmark treaty that aims to expand access for visually impaired persons and other persons with print disabilities to information, culture, and education. By facilitating access to books and other printed material, the treaty holds the potential to open up worlds of knowledge. If the United States becomes a party to this treaty, we can reduce the book famine that confronts the blind community while maintaining the integrity of the international copyright framework.
The United States was also proud to join 141 other countries in signing the Convention on the Rights of Persons with Disabilities in 2009, and we are working toward its ratification. Americans with Disabilities, including those who are blind or visually impaired, should have the same opportunities to work, study, and travel in other countries as any other American, and the Convention can help us realize that goal.
To create a more level playing field and ensure students with disabilities have access to the general education curriculum, the Department of Education issued new guidance in June for the use of Braille as a literacy tool under the Individuals with Disabilities Education Act. This guidance reaffirms my Administration's commitment to using Braille to open doors for students who are blind or visually impaired, so every student has a chance to succeed in the classroom and graduate from high school prepared for college and careers.
We have come a long way in our journey toward a more perfect Union, but we still have work ahead. We must fulfill the promise of life, liberty, and the pursuit of happiness and expand the freedom to make of our lives what we will. On this day, we celebrate the accomplishments of our blind and visually impaired citizens, and we recommit to building a Nation where all Americans, including those who are blind or visually impaired, live with the assurance of equal opportunity and equal respect.
By joint resolution approved on October 6, 1964 (Public Law 88-628, as amended), the Congress designated October 15 of each year as "White Cane Safety Day" to recognize the contributions of Americans who are blind or have low vision. Today, let us recommit to ensuring we remain a Nation where all our people, including those with disabilities, have every opportunity to achieve their dreams.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim October 15, 2013, as Blind Americans Equality Day. I call upon public officials, business and community leaders, educators, librarians, and Americans across the country to observe this day with appropriate ceremonies, activities, and programs.
IN WITNESS WHEREOF, I have hereunto set my hand this eleventh day of October, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.
BARACK OBAMA
~~~
STATE/LOCAL
NYC Principal Holed Up in Cramped Room Waiting for Wheelchair Lift. ABC News (10/16) (Susan Donaldson~James)
New York City school principal Joann Barbeosch has been paralyzed since May, but she has been confined to more than her wheelchair for months. The popular administrator has been holed up in a cramped first-floor utility room with no ventilation -- a floor below her students and teachers.
Parents at PS 94 in Queens, N.Y., are up in arms because they say school officials have been dragging their feet to make Barbeosch's workplace accessible to the disabled. All the classrooms and the school's auditorium are up a flight of stairs on the second floor.
They say the disabled principal is now working next to the bathroom and school cafeteria where the smell of French fries wafts into her makeshift office.
"Before, she was all over the place," said Gia Ann Bonavita, whose two girls go to PS 94 in the borough's Little Neck neighborhood. "Kids would constantly pass her office and go get lollipops.
"Her door was always open and she was in plain sight. She was there and could hear what was going on. Now, this is her only entrance and the boiler room is to the side. She is not able to be as active."
The NYC Department of Education (DOE) has been unable to provide an elevator or wheelchair lift at the K-5 school so that Barbeosch can return to her upstairs office.
DOE spokeswoman Marge Feinberg said in an email that administrators had been working to "secure capital funds" and had informed Barbeosch of the plans "several weeks ago."
"We are making accommodations, which is anticipated to be completed in January," she told ABCNews.com.
Chiara Coletti, chief spokeswoman for the Council of School Superintendents and Administrators, which represents Barbeosch, is aware of the problem.
"We have been in conversations with [Barbeosch] and the DOE and understand they are embarking on construction," Coletti said. "We think they are doing this in good faith."
But parent Bonavita says she's in the dark.
"I have no idea what's going on," she said. "We went to a PTA meeting two weeks ago and she [Barbeosch] filled us in on her status. But I don't know why it's taking so long, whether it's paperwork. Whatever helps she needs, they should give to her.
"It's really sad," added Bonavita, 40, a mother of three who has been active in the PTA. "Let's get the show on the road. With a new core curriculum and so many demands on our kids to succeed, let's give the administration what they need so they can fight for us."
Parent Matt Saliba was also indignant.
Barbeosch's "sense is, they're putting it off and putting it off and hoping the problem will somehow go away," he told the New York Post, which first reported the story.
"She's the captain of the ship that's working out of the boiler room."
One DOE staffer told the Post that Barbeosch had been "pleading with us" for a quick and easy installation of a lift.
"She doesn't complain," the staffer said. "She just makes the best of everything. But this is really getting to her.
"This is her life. Her life is school. Watching kids learn, and just being there."
Barbeosch, 70, told ABCNews.com that she was paralyzed from the waist down form a spinal cord injury, but would not elaborate on her situation at the school because of a DOE policy that prevents employees from speaking publicly.
But she said she had been emotionally touched by so many who are fighting to help her. "Yes, they are a wonderful community," Barbeosch said.
Bonavita said Barbeosch was absent from school "half of last year" and was sorely missed. "We didn't realize how much she played a role in the school and was so present in children's lives," she said.
"Now that she is back, it's tremendous," Bonavita said. "She had a very open-door policy. In my experience, whenever we had an issue, we could always speak to her and surprisingly enough, you never had to make an appointment."
The 1990 Americans with Disabilities Act prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation and telecommunications.
"Federal law is clear," said Wendy Hensel, an associate dean at the Georgia State University College of Law in Atlanta. "If you have an employee with a disability -- and it's pretty clear she is disabled -- you have to make facilities acceptable and reasonable accommodation.
"What is interesting about this is you typically don't see this relating to people in charge or in wheelchairs," Hensel said. "These are people who really need to be on site and it's important to a school. Usually, they do whatever they can to accommodate them.
"[The Board of Education] knows what they have to do to accommodate and foot-dragging is against the law," she said. "It's been four months and the fact that accommodations have not been made is quite unacceptable."
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A shift toward the broader community. Times Union (10/11) (Rick Karlin)
Albany
The state Office for People with Developmental Disabilities expects by 2018 to have no more than 150 disabled New Yorkers residing in traditional state-run development centers, officials said Friday.
Currently, there are about 1,000 people in facilities such as Niskayuna's O.D. Heck Center. That complex is slated to close in 2015.
Among other changes on tap: increased rental assistance for those with disabilities, and the use of an existing ombudsman program that deals mostly with elderly nursing home residents to help oversee services for the disabled.
Over that five-year period, planners are also aiming to move 10 percent of the approximately 92,000 disabled people who now live in private nursing facilities into the broader community.
Those are among the plans discussed during a meeting of Gov. Andrew Cuomo's Olmstead Cabinet. That group of state officials takes its name from a 1999 U.S. Supreme Court decision that ruled people with developmental disabilities or mental illnesses should be allowed to live in the broader community rather than institutions.
In keeping with the decision and as part of a long-term effort to streamline the state's Medicaid system, planners at OPWDD as well as the Office of Mental Health over the summer said they would be closing many of their remaining facilities, and instead concentrate on helping people live in their home communities.
Friday's meeting focused on a 30-page plan to achieve that goal. There will be more details as the plan develops, but so far members of the state's disability community are pleased with the concepts.
"This lays the groundwork for some very exciting things to happen,'' said Bruce Darling of the Rochester-based Center for Disability Rights. "This has been a long time coming."
Other changes include what officials said would be a broader universe of people who can administer medications — traditionally the province of medical personnel such as nurses.
"You can't live in the community if you constantly have to go back to a health care worker to receive the medications that you need," said Maggie Hoffman of the New York State Self-Determination Coalition.
Several speakers, including people who had previously been in state psychiatric hospitals or disability centers, said they would need keep close tabs on how the money for services is allocated.
"I am cautiously optimistic," said Todd Vaarwerk of the Independent Living Center in Buffalo, prompting chuckles from the crowd. "I never thought I'd be able to say that."
rkarlin@timesunion.com • 518-454-5758 • @RickKarlinTU
~~~
Lack of Wheelchair Ramp Creates Awkward Situation at Lakeland City Commission Debate.
The Ledger (10/16) (John Chambliss)
The Ledger (10/16) (John Chambliss)
LAKELAND | Eddie Hall sat separate from his fellow City Commission candidates Wednesday, but it wasn't planned.
In a way, it was a visual representation for his candidacy.
During the lunchtime debate, Hall, a paraplegic, touted the need for more diversity in the city and said he's been a driver in the community for additional benefits for the disabled. He is running against three other candidates for the city's at-large seat.
When the candidates were called to the dais at Imperial Swan, there wasn't a ramp for Hall, and no one offered to move the debate to the floor level.
J. Lenora Bresler, programs chairwoman for National Association of Women Business Owners (NAWBO), helped organize the debate.
"It was simply my fault," Bresler said later. "I was not aware he was handicapped."
Bresler said she and other organizers attempted to find a ramp at the hotel before the debate started.
Hall said he didn't want the organizers, NAWBO and American Business Women's Association, to look bad, but he said something should have been done before the debate.
Hall said he is accustomed to being treated differently.
"There needs to be a change for disabled awareness in the city," Hall said.
None of the candidates offered to sit with Hall nor brought up the situation during the debate, which lasted about an hour. Most said afterward it was an awkward situation.
"I felt bad," Lakeland Mayor Gow Fields said. "I don't know if they knew about it."
Fields' opponent for mayor, City Commissioner Howard Wiggs, said it would have been better if they had all been sitting on the same level.
Hall is running against Ricky Shirah, Jim Malless, and Michael Tamney.
Tamney said in hindsight he should have joined Hall on the floor. He said it was an uncomfortable situation for him.
"My dad is in a wheelchair," Tamney said. "I care very much for Eddie."
Tamney said he helped Hall tie his tie before he, Hall and Shirah took an elevator up to the debate. Tamney said Bressler told him she was working to correct the situation when he pointed out to her that there wasn't a ramp for Hall.
Malless said he didn't see Hall's location as an issue.
"I guess I don't see him as handicapped," Malless said.
Shirah said he started to sit next to Hall, but decided against it.
"I've seen how he's been discriminated against," Shirah said. "I should have sat next to him."
City Commissioner Don Selvage also participated in the debate, although he was elected without opposition. Commissioner Edie Yates, who also was elected without opposition, was invited but did not attend the debate.
Selvage said he noticed the situation with Hall "right away."
"Eddie handled it well," Selvage said. "He moved right along."
Hall, 50, moved to North Lakeland from Michigan with his family when he was 8 years old. A couple of weeks after the move, he was struck by a car traveling 70 mph on Socrum Loop Road, leaving him a paraplegic.
Hall said he and his sister were playing baseball. The ball was hit across the street, and Hall went to retrieve it. He was struck by the car when he was coming back.
He worked at Publix Super Markets for 26 years, moving up the ranks from the dispatch department to inventory control manager for the Publix dairy-processing operation. He currently works part-time at the South Lakeland Home Depot.
The debate centered around questions that have been previously answered by candidates. Bresler asked about the most pressing issue in the city, the role city government plays when new businesses open and why residents should vote for them.
Most of the candidates said the problems at the Lakeland Police Department were the city's biggest concern. Many of the candidates also said that city government should focus more as a catalyst for new businesses rather than be a regulator.
[ John Chambliss can be reached at john.chambliss@theledger.com or 863-802-7588. ]
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TRANSPORTATION
Amtrak Stations Cited For Accessibility Problems. Disability Scoop (10/17) (Michelle Diament)
More than two decades after the Americans with Disabilities Act took effect, many Amtrak stations across the country are not fully accessible to those with disabilities, a new report finds.
In visits to 94 train stations in 25 states and Washington, D.C., advocates with the National Disability Rights Network found accessibility issues at 89 stations.
Barriers ranged from inaccessible restrooms to platforms that were not level with trains and ticket counters that were too high for people using wheelchairs, according to the group’s report released Wednesday.
What’s more, many stations did not offer ramps or elevators as an alternative to stairways, visual displays allowing people with hearing impairments to access announcements were lacking and accessible parking spaces at some stations were poorly marked, crumbling or uneven, the investigation found.
“Our reviews show that Amtrak’s negligence goes beyond simply ignoring the Americans with Disabilities Act, but demonstrates a deliberate disregard for passengers with disabilities,” said Curt Decker, executive director of NDRN. “If you are a person with a disability who wishes to travel on Amtrak, the message is pretty clear: you are not welcome here.”
The red flags come as passengers with disabilities represent a growing group of train riders. Through June, Amtrak indicated that ridership among those with disabilities rose 20 percent this fiscal year over last.
Amtrak spokesman Steve Kulm said the service is working to beef up access. Improvements have been made at over 200 stations in the last four years including restroom renovations and repairs to platforms, sidewalks and ramps, among other changes, he said.
Additionally, all stations have accessible seating and restrooms and accessible bedrooms are available on all long-distance trains, according to materials provided by the passenger train service.
One barrier is that Amtrak owns just a small percentage of the nearly 500 train stations it services across the country, Kulm said. Amtrak said it is working with owners to make improvements.
In a statement over the summer, Joe Boardman, president and CEO of Amtrak, acknowledged that problems remain, saying “we are not satisfied with our pace of progress on accessibility issues at the stations we serve.”
For the report, advocates with the National Disability Rights Network visited train stations in Alabama, Arkansas, California, Colorado, Delaware, Florida, Indiana, Louisiana, Maryland, Michigan, Minnesota, Missouri, Montana, New Jersey, New York, North Carolina, North Dakota, Ohio, Oregon, South Carolina, Texas, Vermont, Virginia, Washington, West Virginia and Washington, D.C.
The disability rights group wants Congress to pressure Amtrak to fix the accessibility problems at its stations. Additionally, NDRN shared its findings with the U.S. Department of Justice and is asking federal justice and transportation officials to help Amtrak develop a plan to achieve full accessibility.
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RESEARCH/STUDIES
Caregivers Live Longer, Study Finds. Disability Scoop (10/16) (Shaun Heasley)
Contrary to popular belief, a new study suggests that being a caregiver for a family member with a disability may lead to a longer life.
In a study looking at data on more than 7,000 people — about half of whom were caring for a loved one with a disability or chronic illness — researchers found that caregivers saw a nine-month increase in life expectancy.
“Taking care of a chronically ill person in your family is often associated with stress, and caregiving has been previously linked to increased mortality rates,” said David Roth, director of the Johns Hopkins University Center on Aging and Health and first author of the study published this month in the American Journal of Epidemiology. “We did not find any subgroup of caregivers in the (study) sample that appeared to be vulnerable to increased mortality risks.”
Roth and his colleagues compared data on 3,503 family caregivers to that of 3,503 non-caregivers. All of those studied were over age 45 and the two groups were matched based on demographics, health history, health behaviors and other factors.
After six years, “significantly fewer” caregivers had died compared to the non-caregivers, the study found, with caregivers experiencing “an 18 percent reduced rate of death.”
The researchers did not find any groups of caregivers who failed to see greater longevity, but they acknowledged that their results may not extend to all types of caregivers.
“If highly stressful situations can be avoided or managed effectively, caregiving may actually offer some health benefits for both the care recipients and the caregivers, including reduced risk of death for those providing care,” Roth said. “Public discussions of caregiving should more accurately balance the potential risks and gains of this universal family role.”
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Original study: here
Family Caregiving and All-Cause Mortality: Findings from a Population-based Propensity-matched Analysis
David L. Roth*, William E. Haley, Martha Hovater, Martinique Perkins, Virginia G. Wadley and Suzanne Judd
↵*Correspondence to Dr. David L. Roth, Center on Aging and Health, 2024 East Monument Street, Suite 2-700, Baltimore, MD 21205 (e-mail: droth@jhu.edu).
Abbreviations: CHES, Caregiver Health Effects Study; REGARDS, Reasons for Geographic and Racial Differences in Stroke.
Received April 9, 2013.
Accepted July 15, 2013.
Abstract
Previous studies have provided conflicting evidence on whether being a family caregiver is associated with increased or decreased risk for all-cause mortality. This study examined whether 3,503 family caregivers enrolled in the national Reasons for Geographic and Racial Differences in Stroke (REGARDS) Study showed differences in all-cause mortality from 2003 to 2012 compared with a propensity-matched sample of noncaregivers. Caregivers were individually matched with 3,503 noncaregivers by using a propensity score matching procedure based on 15 demographic, health history, and health behavior covariates. During an average 6-year follow-up period, 264 (7.5%) of the caregivers died, which was significantly fewer than the 315 (9.0%) matched noncaregivers who died during the same period. A proportional hazards model indicated that caregivers had an 18% reduced rate of death compared with noncaregivers (hazard ratio = 0.823, 95% confidence interval: 0.699, 0.969). Subgroup analyses by race, sex, caregiving relationship, and caregiving strain failed to identify any subgroups with increased rates of death compared with matched noncaregivers. Public policy and discourse should recognize that providing care to a family member with a chronic illness or disability is not associated with increased risk of death in most cases, but may instead be associated with modest survival benefits for the caregivers.
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CULTURE/MEDIA
A Life Lesson About People With Disabilities for Parents Everywhere. Huffington Post (10/16) (Rachelle Friedman)
Since becoming a quadriplegic three years ago, I have quickly learned that people don't know a whole lot about the disability community. When you're uneducated about something, I think it's normal to feel uncomfortable with it. Maybe even afraid of it.
While out in public I often get stares. People will even avoid the aisle I'm in at a store and quite often jump out of my way as if I'd run them over. Keep calm. It's only a wheelchair!
Wheelchair users don't exactly have the luxury of blending in when they want to. Sometimes I wish I could, but when I'm out and about I personally try and make an effort to smile and wave when I roll by a child. Giving a child a good experience may ultimately make them more understanding and comfortable. The problem is though that some parents don't know how to react to their child's curiosity.
Here are few insights about how you can desensitize your child around people with disabilities.
While rolling along at the mall the other day, a kid stared at me while standing with his mom in a store. It wasn't a scared or judgmental stare, but clearly he was just curious. He said something to his mom about my wheelchair and I was compelled to stop and say hello. I smiled and asked the little boy if he wanted to see something cool.
I have spinners on my wheels so I made sure to give it a good spin for him. His eyes lit up and he asked excitedly if he could try. Well of course I said yes. He was totally diggin' the wheels.
His mom seemed to think it was pretty cool that I stopped to let him get a closer look. She told him to tell me thank you as I rolled away and waved goodbye. But just as I was starting to leave he yelled for me to wait. I turned around.
"What is it, buddy? Did you have a question you wanted to ask me?"
He paused for one second but then said, "No I just wanted to give you a hug." He then ran up, wrapped his little arms around me and gave me a sweet peck on the cheek. My heart melted! I wasn't exactly used to such awesome encounters with kids.
That little boy's mom handled it perfectly. She didn't tell him to be quiet when he said something about my chair.
What parents don't realize is that when you hush your child in a situation like this, you're essentially telling them that this is something they shouldn't ask about. It becomes a taboo subject. If your kid asks you "Why is that person in a wheelchair?" Use this as a teachable moment. Simply tell them "their legs don't work as well as they could so they use wheels to get around." If I hear a parent answering their child's question I might stop, smile and let the child see the chair and ask me a question if they would like.
But if I see a parent hush their child, it actually makes me feel really uncomfortable. I would've never turned around to talk to that cute kid had his mother hushed him. And our awesome interaction would've never happened.
When I'm rolling around in public, it's really common for people to jump out of my way even if I'm still like 10 feet away. Now I'm not talking about nicely stepping aside. I mean they literally JUMP out of my way. It's super awkward and in those moments I'm reminded of how people view me in my chair. Often times these people have their children with them. They will grab their child and quickly pull them out of the way.
I know they are trying to be courteous but the reality is your child knows you're treating me differently. You don't do that for someone walking around so why would you for someone on wheels?
It's probably because you yourself are a little uncomfortable around something you're not used to encountering. I totally get that. But try to be aware of how your reaction impacts your child. You are their protector.
I see the faces on these children and a lot of times they go from smiling and being care free to being very timid and scared. It definitely sends the wrong message. There's nothing wrong with giving me space if I can't get by, obviously! But your child can tell when you're uncomfortable.
It's really simple actually. Just lead by example. If you act comfortable around someone with a disability, your child is likely to follow your lead. Children will have questions and it's OK to answer. If someone with a disability overhears, realize that most of us do not care. We'd much rather you answer your child's question than to hush them and jerk them away.
It's important that your child knows a few things about people who may have a disability. Make it clear that someone with a disability is nothing to be afraid of. You are either born with a disability or you acquire a disability through an accident. Disabilities are not contagious.
But here is the big life lesson. They need to realize that everyone is different and that's OK. Some differences you can see more than others. Some people have different likes, dislikes, personalities, cultures and so on.
All of these differences should be accepted and embraced. So when you are out and about with your child just makes a point to treat us like you'd treat anybody else. No need to stare, ignore, avoid or jump out of the way. I'm just on wheels instead of feet. The fact that I use a wheelchair is only one characteristic about me. I'm willing to bet I have more in common with you than you even know.
Rachelle Friedman is a c6 quadriplegic who was paralyzed at her bachelorette party in 2010 after being playfully pushed into a pool. Her story went international and has been featured on the Today Show, CNN, HLN, MSNBC, Vh1 and other various media outlets. Since then she has become a motivational speaker, blogger, and ambassador for the spinal cord injury community. Rachelle is currently writing a book due out in Spring of 2014. Visit www.rachellefriedman.com to read more about Rachelle's story.
Rachelle writes regularly for The Mobility Resource, where this post first appeared.
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Why I write my Downs syndrome dad blog. BBC News (10/17) (Yhomas Bachofner)
I'm a graphic designer from Cheshire, not known for writing or reading any books. So it came as a surprise to me that I could even string a sentence together, let alone write a blog that is well received - I'm guessing it's because it comes from the heart.
My site is about Rosie's achievements, such as last week when she stood up for the first time, but it also gives me an opportunity to do my little bit towards raising positive awareness of Down's.
The first post was published on 14 February 2012 but the idea to share our story with the world came much earlier.
Continue reading the main story
Thomas' list of 'what ifs?'
What if I don't ever get used to the inevitable stares from the ignorant corners of society?
What if Rosie can't ever walk?
What if Rosie attends school and she's the only person in her class not to get a party invite?
What if she's bullied and picked on by her peers and she thinks they are her friends?
What if name calling leaves a lasting mental scar on her and/or her brothers?
What if she becomes too dependent when she's older?
What if I become so protective it affects her ability to become independent?
What if I can't do enough to help her reach her full potential?
What if I can't afford the extra classes or development tools she could really use to her benefit?
What if she does need that further heart surgery in her twenties?
What if... and the list goes on
When my wife Karen and I learnt that our unborn daughter had Down's syndrome, it was a shock, and it didn't feel like anybody understood our predicament.
As a parent, you assume that everything will be fine. Our two boys, Harry and Joe, were born without complications. But we were told about Rosie's condition in such a negative way that we thought it would change our lives drastically for the worse.
I found that all I wanted to do was read real-life parent stories from people in our situation, not the science and figures you become bombarded with when searching online. But there weren't many Down's syndrome parenting blogs around at the time and even fewer were written from a dad's perspective.
I started to jot things down and was surprised to find that it helped get my emotions out. My scribbles eventually turned into The Future's Rosie which is having more of an impact on me and others than I could ever have predicted.
Initially it was a handy way of telling my friends and family how I was feeling and it meant I didn't have to repeat myself over and over at what was a delicate time for me. But many of them began to share it with their friends and, before I knew it, my blog was being read by hundreds of people.
I've shared lots of private thoughts about her development and how we as a family are all pitching in to help her.
Last year I wrote about what I called "a barbaric-looking developmental aid" given to Rosie by her physio. It's a standing brace and we couldn't get her to use it. She hadn't wanted to walk or crawl, so we got Rosie's brothers to stand on the sofa and blow bubbles which made her reach up and support her body with her legs in order to strengthen them.
I've covered learning the Makaton sign language, feeling full of pride when my young sons Harry and Joe stood on stage at school to give a talk about Down's to 250 kids, and I wrote about the weekend we all survived without Mummy being there.
One of the hardest things I have done is write about Rosie's surgery. Children with Down's syndrome often have related heart difficulties and Rosie was born with a hole in the heart which needed fixing. My blog entry on that day included post-op pictures of my daughter - it felt like these might be useful for parents to see, if they too have to face the same operation with their Down's syndrome child.
As Rosie got older, I quickly learned that my own pre-conceived ideas of Down's were both ignorant and outdated. I wanted to teach others about the reality in a non-patronising manner, so decided to use myself as an example in my own social media campaign. I did it from Rosie's perspective and called it Things I've Taught My Daddy.
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Other Down's parents blogs
There is an increasing number of blogs written by parents of children with Down's syndrome.
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As with the blog, before I knew it the captioned images I shared on Facebook and Twitter had been seen by thousands worldwide.
One of the messages I tried to communicate was that people with Down's are people first and foremost. They are more like their families than they are each other, though many people still find it difficult to see past the physical characteristics associated with the syndrome.
Life with Rosie really is very normal, in fact she has been a far easier baby than both her older brothers were. The whole family love her to pieces and I genuinely wouldn't change a single thing about her - well, maybe the volume of her cries when she is hungry.
After all "Down's syndrome" isn't who she is, it is just a part of her.
Thomas Bachofner blogs at The Future's Rosie
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EDUCATION
Penn graduate students advocate for disability education. The Daily Pennsylvanian (10/16) (Virginia Walcott)
After realizing the lack of disability-related education in their curriculum, students in the School of Social Policy & Practice decided to make a change.
Natalie Stollon and Katherine Streit, both 2013 School of Social Policy & Practice graduates, created the Disability Student Interest Group last spring. Their main motivation was that many classes offered by the School of Social Policy & Practice focused very little on disability related issues.
Caren Steinway, secretary for DSIG and second year dual degree master of social work and public health candidate, share the founding members’ concerns, saying that “a lot of people realized [disability education] wasn’t emphasized in most of our other classes…. we noticed there was a lack of awareness in our classmates, too.”
According to Stollon, this is also a problem in social work curricula in general.
This motivation to raise awareness in the curriculum remains a focus for the group even though the two founders have since left. Today, Emmaline Imbriglia and Lizzie Flanagan, both second year master of social work candidates, run the group.
Though established last spring, this semester is the student group’s first active one.
One of the first projects Flanagan and Imbriglia did in preparation for this semester was to gather articles about disability education and write proposals to have them placed in the master of social work curriculum. Today, two of these proposals have been accepted by the University, meaning several classes now include disability education in their syllabi.
In addition to academic motivations, there is also a considerable level of personal interest and passion within the group.
Stollon, one of the founders, has 10 years of experience in working with people with disabilities and their families. “I knew it was an area I was very interested in, and so I chose social work… It’s exciting to now have a common interest group—it’s great for the student body in general and the faculty and school to be receptive,” she said.
Imbriglia, the president, and Flanagan, the group’s vice president, also brought their past experiences in working with disabled people to the group.
Flanagan first became interested in working with the disabled when she was an undergraduate, “I worked for a year with a woman who was deaf and had multiple developmental disabilities. This was a great experience, and it opened my eyes to something I had no experience with and was very passionate about,” she said.
“I’m passionate about disabilities because I have an older brother who was born with multiple types of disabilities. He had a lot of support growing up, and has accomplished so much. We’re very close, and I want to be able to help other kids like him live to their fullest potential,” Imbriglia said.
Today, the group is working hard to spread their mission around campus. Most recently, they hung fliers in academic buildings that give short descriptions of potential problems caused by disabilities to raise awareness about the issue. They have also made October Disability Awareness Month at Penn, and plan to hold informational movie nights and bring in educational speakers to campus. The group will also be going to Villanova University in November to volunteer at the Special Olympics.
Flanagan said that they are still looking to grow. “Right now we are just in the social work program, but we are hoping to expand to the rest of the School of Social Policy, the Graduate School of Education, and the graduate student community.”
Steinway said she is “looking forward to seeing where it goes and what we can accomplish together.
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SPORTS
Cards provide captioning for deaf patrons at stadium. AZ Central (10/16) (Paul Giblin)
The Arizona Cardinals and the Arizona Sports and Tourism Authority have devised a new strategy to accommodate deaf and partially deaf fans at University of Phoenix Stadium this season.
The organizations are providing text captioning on video boards so that football fans who have difficulty hearing the public-address system can read the play-by-play information as games are in progress.
The captioning system is the result of a year’s worth of planning and refinement, shaped in large part by a lawsuit brought by Michael Ubowski, a Mesa resident and advocate for the deaf.
The Cardinals, the sports authority, Ubowski and the state Attorney General’s Office settled the suit before the current NFL season started, following final color adjustments to the captioning system, which is under the two main scoreboards.
The sports authority owns and operates the $455 million stadium in Glendale, where the Cardinals have played since 2006. The Attorney General’s Office joined Ubowski in the suit.
Previous attempts to enhance the game-day experience for deaf and partially deaf fans were less successful, said Ubowski, who typically attends one to three games a year.
Initially, the Cardinals provided a deaf seating section that featured a limited number of seats with small monitors that displayed text captioning.
“This was inadequate because it segregated people who are deaf and limited our seat choice, even limited family who may have one or more deaf relatives,” Ubowski said in an e-mail.
A second system involved hand-held devices that featured captioning, but that system had a number of problems, he said.
“The smartphone was not adequate, as the captions were delayed and small, the battery life was weak and the signal strength was inconsistent,” he said.
“Additionally, it did not allow me to fully enjoy the game. Imagine holding a device in your hand all game while trying to enjoy a beverage or talking, using sign language, with your friends.”
The Cardinals installed two text screens that display real-time captioning under the northern and southern scoreboards late last season at a cost exceeding $100,000, said John Drum, the Cardinals’ vice president of stadium operations.
“A good amount of time was spent developing the system,” Drum said. “It’s not something you just pull off the shelf and say, ‘Here’s what we want to do.’ A lot of effort was involved.”
Initially, the boards used white lettering on red backgrounds, which complemented the Cardinals’ color scheme but was ineffective for people who were trying to read from a distance, said J.J. Rico, an attorney with the Phoenix-based Arizona Center for Disability Law, which represented Ubowski in the lawsuit.
A more readable color combination would have been yellow or white lettering on a black background, like captioning on most TVs.
So, even after the team installed the boards, the plaintiffs pressed on with the lawsuit to address the color scheme.
They filed the suit in Maricopa County Superior Court on Jan. 18. It was moved to U.S. District Court on Feb. 21.
The sides reached a settlement on June 28, with the Cardinals agreeing to use one of the recommended color combinations for the 2013 season and beyond. The Cardinals have opted for yellow on black.
The captioning system does an excellent job of keeping fans abreast of game-time chatter, Drum said.
“That text will continue to scroll throughout the game,” he said.
“That’s anything from the announcer reporting on the plays to anything the referee says over the PA system or any of the other programming that we have.”
The team also still offers smartphones that have captioning for fans who prefer them, he said.
Ubowski hasn’t attended a Cardinals game yet this season because of health concerns, but he has spotted the boards while watching games on TV, and deaf friends who have gone to games have given the boards positive reviews, he said.
The boards benefit more than just deaf and partially deaf fans, Ubowski said.
Everyone in the stadium can turn to them when crowd noise becomes so loud that the public-address system can’t be understood.
The boards also are available for the Fiesta Bowl and other stadium users, Drum said.
As part of the agreement, the Cardinals also agreed to donate $5,000 and 20 game tickets each to five schools and organizations that benefit deaf and partially deaf patrons.
Ubowski said the Cardinals have a unique legacy because they were the first NFL team with a deaf player.
The Cardinals signed defensive tackle Bonnie Sloan, who played in four games in 1973 when the team was based in St. Louis. His career was cut short by a knee injury.
The Cardinals’ opponent tonight, the Seattle Seahawks, features another deaf player, fullback Derrick Coleman.
“Mr. Coleman may benefit from watching some of the captioning that he cannot hear,” Ubowski said.
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TECHNOLOGY
All-terrain wheelchair helps people with disabilities get back on track. CNN (10/16) (Natalie Angley)
(CNN) -- Cpl. Michael Boucher will never forget June 12, 2011. He was on his second deployment with the Marines in Afghanistan. Another squad had been hit by two improvised explosive devices, and he was helping to clear the landing zone so a helicopter could pick up the casualties.
"An IED was set off, and at first I didn't realize it was me that was hit," he said. "I was in the air and looked down and realized both my feet were missing."
Lying inside the crater from the blast, Boucher began to tie a tourniquet around what was left of his right leg.
"Before I finished putting the tourniquet on, the doc got to me. He placed his hand on my shoulder and said, 'Don't worry brother. I got you,' " he recalled. "It was a blessing that I stayed conscious because I didn't have to wake up later and realize that both of my legs were missing."
At 22, Boucher was a double-leg amputee.
"The first two weeks were pretty hard. I struggled in my own head to try and picture the future of my life, and it was hard to see anything good out if it," he said.
Before the accident, Boucher loved to hunt and fish. But he questioned whether it would even be possible to do so without his legs.
"I was trying to figure out in my mind what I was going to be able to do and what I wasn't," he said.
Thanks to an all-terrain wheelchair, Boucher is one of a growing number of injured veterans and people with disabilities who are getting back to doing what they love outdoors.
Designed like a mini-tank, this wheelchair can go almost anywhere off road -- through mud, sand, snow and in up to a foot of water. It can even go up and down hills.
Tim Swenson created the Action Trackchair about 10 years after his son was paralyzed in a car accident.
"You don't ever want to get that phone call, but it happened," Swenson said. "But I always thought about how can I get Jeff back outdoors and off the hard surface?"
With 30 years' experience in the motorsports business, Swenson designed an off-road electric chair that could help more than just his son.
"We just started using some of the things I knew about snowmobiles and ATVs (all-terrain vehicles) ... along with electric wheelchair components. And we started building," he said. "The tracks we use are similar in design and quality to snowmobile tracks."
The chair is controlled by a joystick and can travel up to 4 mph. It can be tilted to maintain balance on uneven terrain.
"One of the biggest fears people in wheelchairs have is falling out of their chair," Swenson said. "The chairs all come with a tilt so if you're going up and down hills ... you can maintain your chair being level."
The size of the chair can be adjusted to fit both children and adults. Accessories such as trays, toolboxes and gun racks can also be mounted to them.
Swenson sold his first chair in 2009 from his factory in Marshall, Minnesota. About a year later, he began designing a second model -- one that allows paralyzed people to stand up.
"There are some standing units out there for people that are on concrete but nothing off road," Swenson said. "I started thinking about how can we help these people stand up and be outdoors or working."
On this chair, the joystick allows paralyzed people to rise up slowly from a sitting to a standing position. They are held in place with knee supports, a seat belt and an optional shoulder harness.
"When you can stand up, now you can go back working, you can paint the house, do some welding or build things outdoors," he said.
But mobility comes with a price. The standard chairs range from $10,000 to $12,000 and are not yet covered by insurance.
Boucher received his chair through the Semper Fi Fund, which provides aid to injured U.S. military members. It has allowed him to get back to doing what he loves most -- hunting and fishing.
"It turns your disability into an ability," he said. "It's made a huge difference ... and it's added that independence back to my life."
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American Association of People with Disabilities
2013 H Street NW, 5th Floor
2013 H Street NW, 5th Floor
Washington, DC 20006 United States
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