AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Monday, 4 November 2013
NATIONAL
McCain and Menendez: Ratify disabilities treaty. USA TODAY (11/3)
This week, the Senate Foreign Relations Committee will begin considering the Convention on the Rights of Persons with Disabilities, which promotes the fairness and equality that people with disabilities enjoy here to countries around the world. This treaty is consistent with our nation's interests and values. The Senate should ratify it this year.
The U.S. set the global gold standard for disabilities rights when we passed the Americans with Disabilities Act in 1990. The act not only improved the lives of Americans living with disabilities, but also inspired other nations to upgrade their laws to recognize that these universal values apply to all citizens. The disabilities treaty before the Senate today is an extension of that act, providing a venue for discussions on disabled access policy internationally. That's a discussion Americans must lead.
Unfortunately, due to a mix of procedural concerns and some objections that were not consistent with the facts about the treaty, the Senate voted it down in December, falling five votes short of ratification.
We understand our colleagues' concerns about U.S. sovereignty and the primacy of our laws, and we are committed to addressing any legitimate concerns. But if ever there were a treaty tailor-made for the advocates of American sovereignty, it is this one. This treaty would not constrain our sovereignty; it would extend the protection of human rights on which America has proudly led the world for decades. It would demand that the world be more like America.
As the late senator Daniel Patrick Moynihan famously said, "Everyone is entitled to his own opinion, but not to his own facts." Here are the facts:
This treaty would do nothing to change America's domestic laws regarding abortion. Likewise, nothing in the treaty would impact the right of U.S. parents to home-school their children. As a matter of U.S. and international law, this treaty would hand no power to the United Nations or any other international body to change America's laws. The opposite is true: The treaty would advance America's high standards for the treatment of people with disabilities to other nations.
Last year, some senators had concerns that the vote was being held during a lame-duck Congress. The hearing this week will begin an open, transparent process, with time for thorough debate and opportunities for amendment.
Assuring basic human rights for the disabled around the world is vitally important to the American people. Nearly 58 million Americans live with a disability, including 5.5 million military veterans. Global accessibility standards — which would be encouraged by the disabilities treaty — are essential for veterans to safely travel, study and work abroad. That is why the most respected veterans organizations in America — including the Veterans of Foreign Wars, the American Legion and the Wounded Warrior Project — support the treaty's ratification. Indeed, the foremost champion of this treaty is former senator Bob Dole, who was seriously wounded fighting fascism in the mountains of Italy during World War II and went on to become among the nation's greatest advocates for people with disabilities.
Worldwide, a billion people live with a disability, 80% of whom are in the developing world. In too many places, those with disabilities are housed in institutions separate from their families, without access to the outside world. In some countries, the disabled are denied the most basic rights such as a birth certificate or a name.
The American approach to disability rights springs from the core of our founding documents. It embodies "equality" and "unalienable rights" in the best tradition of our ideals. The United States has already been the trailblazer for the rights of the disabled around the world. Now is not the time to step away, but the time to step up and continue to lead by ratifying the Convention on the Rights of Persons with Disabilities.
Robert Menendez, a New Jersey Democrat, chairs the Senate Foreign Relations Committee. John McCain, an Arizona Republican, is a senior member of the Senate Armed Services Committee.
In addition to its own editorials, USA TODAY publishes diverse opinions from outside writers, including our Board of Contributors. To read more columns like this, go to the opinion front page or follow us on twitter @USATopinion or Facebook.
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Senate To Revive Disability Rights Treaty. Disability Scoop (11/1) by Michelle Diament
The U.S. Senate is gearing up to reconsider an international disability rights treaty that was rejected by the body on its first go-around last year.
The Senate’s Foreign Relations Committee is scheduled to take up the United Nations Convention on the Rights of Persons with Disabilities at a hearing this coming Tuesday. It will mark the first time that lawmakers will consider ratifying the treaty since it was defeated in a vote last December that fell largely across party lines.
The convention calls for greater community access and a better standard of living for people with disabilities worldwide.
Ahead of the hearing, Vice President Joe Biden rallied supporters Friday, meeting with a group of disability advocates at The White House to discuss the administration’s backing of the treaty.
Meanwhile, disability advocacy groups are urging their members to attend Tuesday’s hearing and to lobby members of the Senate committee. A broad coalition of over 700 disability, civil rights, faith, business and veterans organizations favor ratification.
The path forward, however, is anything but certain.
The United States signed the convention back in 2009, but Senate approval is needed in order to make participation official. Last year, President Barack Obama sent the treaty to the Senate for ratification. Despite bipartisan support for the treaty, opposition from Republicans was strong and the measure failed to garner the two-thirds majority required for ratification.
Opponents of the convention — spearheaded by former Sen. Rick Santorum, R-Pa., the Heritage Foundation and the Home School Legal Defense Association — have argued that the treaty would compromise U.S. sovereignty and threaten the ability of parents to determine what’s best for their kids.
Supporters, however, say those arguments are baseless and that the treaty would merely extend many of the protections already in place domestically under the Americans with Disabilities Act to those abroad without requiring any change to U.S. law.
To date, 138 countries have already ratified the convention, according to the U.N.
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Health law may strain mental health system. USA TODAY (11/3) by Beth Miller
WILMINGTON, Del. -- Tricia Hill gave up trying to get health insurance years ago.
The 39-year-old Newark resident spent two decades in the throes of a chronic mental health disorder, a condition that made it hard for her to hold a job and easy for insurance companies to reject her applications for coverage.
"It seemed like it was hopeless," said Hill, who declined to detail her condition.
So she relied on disability benefits.
That's about to change dramatically for Hill and thousands of other Delaware residents, as the Affordable Care Act, also known as Obamacare, makes it illegal for those with pre-existing conditions to be rejected for coverage — and mandates mental health care coverage starting in 2014.
But just because you'll be entitled to the services doesn't mean you'll get an appointment — at least not a quick one in Delaware, which has a shortage of mental health practitioners, according to the U.S. Health Resources and Services Association.
"There is no way we can serve all of them," said Dr. Ranga Ram, a psychiatrist in Brandywine Hundred, who expects far more emerging patients than the system can absorb, with some estimates putting the number at 30,000. "The hope is that they will stagger in over a period of three or four years."
The number of working psychiatrists in Delaware is hard to come by. The number who are accepting new patients is even more elusive. The state Division of Professional Regulation reports 113 licensed psychiatrists in the state, but some are retired and/or not accepting new patients.
New avenues will have to open, Ram said — for therapists, advanced practice registered nurses and others — and more collaboration with primary care physicians will be needed.
But coverage starts in two months, and the gaps in the system will be enormous.
Effective treatment can have profound implications for those who need the care. When their condition is stabilized — as Hill's now is — they can get and keep better jobs, avoid medical problems triggered by unaddressed mental health conditions and avoid situations that lead to criminal charges and/or jail.
Over capacity
Federal officials estimate that one in four people with no insurance have mental health or substance abuse conditions. They expect 32 million new patients to seek care under the new law.
In Delaware, which has an estimated 90,000 uninsured residents, that would mean about 22,500 with potential need for care — not counting those who already have some kind of medical insurance but none for mental health or substance abuse.
Meanwhile, Delaware's mental health system is already over capacity, psychiatrists and others in the field say, sometimes leaving patients to wait three or four months for an appointment with a psychiatrist.
"We've had a pinch in supply and demand all the way along the line," said Dr. Michael Marcus, director of outpatient services in psychiatric and behavioral health for Christiana Care.
Christiana Care is expanding its approach to mental health care, and the state has been aggressive in its expansion of community-based care to comply with requirements of a 2011 settlement with the U.S. Department of Justice.
The Department of Justice settlement is an important part of the context, because its 2009 investigation found that the "vast majority" of patients at the Delaware Psychiatric Center should be living in the community, not in the state's largest psychiatric hospital. The state is required to make sweeping reforms to support community-based care.
A growing network of service and support is emerging statewide — crisis services, drop-in centers, peer supports and mental health services.
Still, according to 2012 data from the Kaiser Family Foundation, only about 39 percent of the state's need is met at current levels.
"We have under-supply and a mismatch in distribution," Christiana's Marcus said. "Fortunately, we've had some lead time to work on this. We're hiring behavioral health care professionals on an ongoing basis and we're in close consultation with state officials to coordinate our plans. … We have to step up all of our games."
To address more severe shortages in rural areas, Lewes-based Beebe Healthcare now has a partnership with In-Sight Telepsychiatry, offering its staff video consults with psychiatric specialists. That capacity is available in the emergency department and on the hospital floors, according to Beebe spokeswoman Sue Towers.
In addition to Beebe, In-Sight is providing telepsychiatry services to Kent-Sussex Counseling in Dover and Crossroads of Delaware in Wilmington, and recently established a partnership with Resources for Human Development (RHD) for its programs in New Castle and Kent counties, said In-Sight account executive Dan Khebzou.
Marcus said another good expansion strategy is the use of "physician extenders" — advanced practice registered nurses, for example — who can assist with evaluations and medications.
But the best strategy is finding ways to integrate mental and medical care, Marcus said.
"Behavioral health care and medical-surgical services have been somewhat siloed," he said. "It's not just more treatment that is needed, but treatment that will improve people's health care," he said. "We have to really keep adding capacity and in a smart way. … So it's not necessarily more of the same, but in a more innovative way."
Christiana Care's decision to embed a psychiatrist in its cardiac center is an example, Marcus said. A person with an undiagnosed anxiety disorder may arrive at the hospital in a full panic attack, with symptoms indistinguishable from cardiac distress, he said. They would get a full cardiac "workup" to find out what's going on medically, Marcus said.
Having a psychiatrist available for a mental health consultation makes it possible to diagnose psychiatric problemswith greater accuracy and treat the patient more effectively.
Removing barriers
The Affordable Care Act removes several artificial barriers to care, psychiatrists Marcus and Ram said. Refusal to cover those with mental health problems will be illegal, and some limits to care have been removed, too. A 20-visit cap on therapy sessions, for example, will be gone, though Linda Nemes of the Delaware Insurance Commissioner's office says all care will be reviewed and managed as it unfolds.
Nemes said health insurance issuers Highmark and Coventry were required to certify an adequate network of providers to gain the marketplace contracts in Delaware. The state will monitor performance to be sure those requirements are met, she said.
The new coverage may open new doors for Hill, who is working part-time as a peer specialist to help others with mental health conditions gain traction in their recovery. Under present rules, she can't take on additional responsibilities or get a full-time job because she must keep her monthly income at or below $1,040 or lose her disability benefits.
If she can get the health care she needs through the Affordable Care Act, she may be able to live her dream — finish her college degree, get a master's, and become a full-time social worker.
"I've made a lot of progress," she said. "I was at a point where I was completely unable to function without a lot of care. I received a lot of assistance. Now, I'm at the point where I have almost no assistance.
"I've come a really long way. I decided to take personal responsibility for my own recovery and started working toward making that happen."
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STATE/LOCAL
Neighbors To Pay $65K After Banning Accessible Vehicle. Disability Scoop (10/31) by Shaun Heasley
Federal officials say a homeowners association is going to pay after refusing to allow a family to park a special vehicle in their driveway that they purchased to accommodate their son’s disability.
The Las Vegas family — which is not being named in legal documents made public this week — bought an ambulance to bring their son to and from medical appointments. Because of his disability, the son must be lying down while he’s transported, officials said.
Despite providing their local homeowners association with documentation of their son’s need for the ambulance, the family said that the Harbor Cove Homeowners Association and its management company barred them from keeping the vehicle in their driveway. The HOA allegedly cited rules prohibiting residents from parking commercial vehicles at their homes.
Now, the HOA and its management company have agreed to pay the family $65,000 and alter their policies after reaching an agreement brokered by the U.S. Department of Housing and Urban Development which stepped in after the family filed a complaint.
Under the Fair Housing Act, housing providers — including HOAs — are prohibited from discriminating against people with disabilities, the agency said.
“Homeowners associations must grant reasonable accommodations that enable residents to meet the needs of family members with disabilities,” said Bryan Greene, acting assistant secretary for fair housing and equal opportunity at the federal housing agency. “Homeowners associations have the same responsibility as housing providers to follow fair housing laws.”
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INTERNATIONAL
New funding for children with muscle-wasting condition. BBC News (11/1) by Marianne Taylor
Families of children with a devastating muscle-wasting condition have welcomed funding for a new medical expert.
Duchenne muscular dystrophy, which affects about 200 children and young people in Scotland, is incurable and causes severe disability.
A shortage of experts makes it difficult for potential new treatments to reach those with the condition.
Parents said the funding would help their children lead more fulfilling lives.
“We need to ensure any treatments developed by scientists make it to the people who desperately need them”~~Robert Meadowcroft
Chief executive of the Muscular Dystrophy Campaign
Duchenne, which mostly affects boys, causes muscles to weaken and waste over time, leading to increasing and severe disability.
Few born with the condition - which affects about one in 3,600 boys - currently live to the age of 30 due to damage to heart and breathing muscles.
A new funding partnership between the Chief Scientist Office and charities Muscular Dystrophy Campaign and Action Duchenne, will provide £75,000 a year for three years for a medical training fellow to research potential treatments and work directly with children.
It is hoped the new expert will be in post by autumn 2014.
'Real hope'
Dr Chris Govender, whose four-year-old son Brandon has the condition, believes the new post will make a difference to the care of Duchenne sufferers.
Dr Govender, from Kilmarnock, said: "Brandon was diagnosed with Duchenne in November 2011, and as healthcare professionals we are under no illusions of the progression of this severe condition.
"The fulfilment of watching our happy boy grow is tarnished by knowing what the future holds for him. However, the search for a treatment is progressing well. We now have real hope that soon our children will receive treatment to slow down this devastating condition and allow them to live fuller lives.
"There is a shortage of clinical neuromuscular specialists working in the UK, especially here in Scotland. This new research fellow will serve as an effective bridge between scientific research and clinical drug trials, and the clinicians treating our boys in the community."
Clinical experience
Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said it is a critical time for research into the condition. He added: "There are several promising potential treatments for the condition in clinical trials.
"This partnership approach and the Scottish government's commitment to funding research is good news for families living with the condition in Scotland and beyond. This new training fellowship will create and develop researchers who have experience both in the clinic and the lab.
"We need people like this to make sure that any treatments developed by scientists tackling Duchenne make it from the laboratory to the people who desperately need them."
Public Health Minister Michael Matheson said: "At any one time, around 200 boys and young men in Scotland are living with Duchenne. Many more people are affected indirectly as family, friends and carers.
"This agreement paves the way to jointly fund a clinical research fellowship which will help drive Scotland to the forefront of clinical research."
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CULTURE/MEDIA
Stop Saying 'Wheelchair-Bound' And Other Outdated And Offensive Terms To People With Disabilities. The Huffington Post (11/1) by Zachary Fenell, the Mobility Resource
Discussing disabilities may feel like trying to avoid metaphorical tripwires.
One innocent misstep and an able-bodied person may receive a tongue lashing just for saying “handicap vehicle” instead of “wheelchair accessible vehicle.”
To help you sidestep situations like the one above, note the following tips when discussing disabilities.
1) Realize wheelchairs enable.
“Wheelchair-bound,” how often do you see that phrase and other similar ones in the mainstream media? Such word choice represents a popular misconception.
Don’t feel bad though, mainstream media. I used to deploy said words, at least until I really started to with my writing delve into the disability niche. Companies like Disaboom and The Mobility Resource educated me on the truth. Wheelchairs enable. A wheelchair increases accessibility and therefore opportunities. Quite the opposite from binding.
2) Empowered suffering.
Another pet peeve of mine is when the mainstream media calls someone with a disability a “sufferer” or “victim.” I live with cerebral palsy (CP) but I don’t consider myself suffering. Instead as I write in my article 5 Ways Cerebral Palsy Benefits Me my CP ended up an empowering force in my life.
3) Different people prefer different terminology.
Certain principals like the two aforementioned reside universally within the disability community. However, different people prefer different terminology. Personally I consider “disability” and “handicap” acceptable. I will use them interchangeably too. Yet others adamantly refuse to use “handicap.” Heck, many hate “disability” and prefer the politically correct phrase “differently-abled.” To overcome these different preferences requires an open mind and patience. Open your mind to different opinions and stay patient.
4) Maintain a person-first narrative.
Maintaining a person-first narrative offers another critical tip. No matter the word you use, aim to showcase the person. Ideally a person’s name will always come before his or her condition. So I’m Zachary Fenell, an author with cerebral palsy. Not, an author with cerebral palsy, Zachary Fenell. Introducing name first, condition second will maintain a person-first narrative.
5) Individuality matters.
A person-first narrative gives way to the final tip today, individuality matters. Labels always contain inefficiencies. Take the classifications “differently-abled” and “able-bodied.” Doesn’t calling people with disabilities “differently-abled” infer people without disabilities don’t differ from each other?
Disability or not each person holds a characteristic marking him or her exclusively unique. Ultimately, individuality transcends any possible label you could choose.
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It’s Hard Not to Stare children’s book opens discussion on disabilities. thestar.com (11/4) by Andrea Gordon
Why is that man in a wheelchair? Why won’t that girl talk and play like other kids?
Sometimes children’s simplest questions are the hardest ones to answer. But author and longtime street youth worker Tim Huff invites them, no matter how sensitive the topic.
Huff’s 2007 picture book, The Cardboard Shack Beneath the Bridge, brought homelessness out of the shadows by helping adults respond to the things children ask when they walk past a panhandler or see a person sleeping on the street.
Now his new book, It’s Hard Not to Stare: Helping Children Understand Disabilities, opens the conversation about people who use a wheelchair, are hearing impaired or have autism or other challenges.
Using simple stanzas and bright illustrations, Huff approaches the topic from a child’s perspective. He acknowledges their curiosity, provides answers and sends the message that having a disability “as you will see/it’s just about people like you and like me.”
Huff’s goal: to demystify the unfamiliar, build empathy and prevent the kind of judgment and meanness he has witnessed during his decades working with the disabled and as an outreach worker on the street with youth.
“If we teach children to be compassionate when they’re young, it spills over to everything and affects their character,” says Huff, co-founder of Street Level, a national advocacy network on homelessness and poverty issues.
Ballet boys
Huff’s manuscript so impressed Ontario Lieutenant-Governor David Onley — who uses a wheelchair as the result of childhood polio — that he wrote the foreword, describing the book as “a remarkable contribution to the dialogue that is taking us closer and closer to being a fully accessible society.”
Onley noted that while many barriers have been removed for those with disabilities, the biggest challenges are negative attitudes and judgment from other people. But Huff’s words and illustrations will guide children “from staring to caring,” he wrote.
To special education teacher Jan Fukumoto, the book presents an opportunity to address children’s questions before those barriers set in. And that’s critical at a time when disabilities such as autism are increasingly prevalent and more kids have classmates and friends with special needs, she says.
That’s why Fukumoto jumped at the opportunity to write the book’s discussion guide, offering parents and teachers a tool that provides factual information and talking points. Both she and Huff consulted people with disabilities, their families and educators through every stage of the project.
“Kids challenge us about our own core values when they ask tough questions, and they can make us uncomfortable,” says Fukumoto, central co-ordinator of autism services with the Toronto District School Board.
Fukumoto has observed the benefits of frank conversation in classrooms. Recently, after a Grade 3 class in Toronto listened to a student with autism explain some of his repetitive behaviours, peers responded by talking about their own ways of coping with anxiety.
“You can see a shift. Kids automatically respond and they end up concluding they have more similarities (with one another) than differences.”
At a time when bullying is rampant, Huff says it makes more sense to build on the positive by instilling compassion and dealing with kids’ questions or uncertainty about the unfamiliar, rather than simply outlawing behaviours through numerous anti-bullying programs.
“Shouldn’t we be aiming much higher for the next generation than just hoping they will tolerate one another?”
It’s a message that seems to be resonating with the teachers and school boards lined up to hear Huff speak. Last month, 600 Catholic elementary teachers in York Region responded to his presentation on social justice with a standing ovation.
That same week, he took his message to 75 school principals in Orillia and led two assemblies on homelessness for 800 students.
In the last few years Huff has taken The Cardboard Shack, along with his own portable shack, to classrooms and auditoriums in schools across the GTA, from wealthy suburban private schools to high-needs classes in Scarborough where some of the students live in shelters.
It’s Hard Not to Stare is the second book in what has become the Compassion Series, published by Castle Quay Books Canada. Huff’s third book, The Honour Drum: Sharing First Nations’ Truths with Children, is planned for 2015. He has also written two adult books based on his experiences working with the homeless and street youth.
“Kids in school need to be educated about these issues,” says Castle Quay’s Larry Willard, who had steered away from publishing children’s books until he met Huff in 2006.
The Cardboard Shack sold 3,000 copies in 18 months without any marketing and Willard was soon hearing from grateful parents. So when Huff pitched the idea of a Compassion Series “I never even blinked.”
“Making kids aware and sensitive to others, when you start young, it plants seeds that continue to grow.”
For more information about It’s Hard Not to Stare and the Compassion Series, visit www.streetlevel.ca streetlevel.caEND To attend the Nov. 7 book launch, where the honourable David. C. Onley is scheduled to speak, contact Julia at juliabeazley@streetlevel.ca
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TRAVEL
Travel Lodging: How to Get an Accessible Hotel Room. New Mobility (11/1) by Josie Byzek
Ashley Lyn Olson is passionate about traveling. As CEO and founder of the organization Wheelchairtraveling.com, the T12 para from San Ramone, Calif., documents every place she visits, both in the U.S. and abroad. She’s seen the proverbial good, bad and ugly in her travels, and is upbeat even in the face of marginal accessibility.
“There have been so many times where hotels are supposed to be accessible, and they generally are, but maybe they have an older building,” says Olson, 30. “Like one in San Francisco. There was an elevator and a roll-in shower that was pretty tight, but I could back in. And to me, it comes down to sleeping and bathing when you travel.”
But she does have her pet peeves. Among them are bathrooms. “Some hotels say ‘you can roll into the bathroom, totally,’ but I need a roll-in shower. Of course I can roll into the bathroom. And they don’t know the difference.” And why do hotel chains make sure that each room looks just like all the other rooms, down to matching bedspreads, but then have unique bathroom layouts? “Sometimes the bench is on one wall and the hand-held shower head on the other, so it becomes more challenging,” she says.
And then there’s, oh yes, bed height.
“Sometimes I’ll use the bed sheets as a rope and climb up the bed. Definitely a pet peeve of mine,” says Olson. “There’s no requirement for bed height by the ADA, which blows my mind.”
Once, while staying at a chic hotel in downtown Los Angeles, she made a big deal about her bathroom needs. “They guaranteed me it would be fine. And it was fantastic,” she says. “Then I go to the bed and there’s a 2-inch-high, 2-foot-wide platform all the way around it. So that means there’s a huge gap between me and the mattress! All of their rooms are like this, it’s their general standard.”
She has learned a trick that usually works when reserving an accessible hotel room. “If you need something really specific, when you make a reservation, talk to someone in housekeeping or maintenance, since they know the hotel intimately,” she suggests.
Be very specific, recommends Olson. It’s not good enough to just ask if a hotel has a shower bench — you have to find out if it’s big enough, and even if it has a back.
This is Not What I Asked For
Olson, a para since she was 14, is a savvy traveler who knows how to ask the right questions to get the access she needs — and whom to ask. But sometimes people who aren’t as savvy can run into major aggravation, says Kleo King, senior vice president of Accessibility Services for United Spinal. King is also a member on one of the U.S. Access Board’s advisory committees.
Olson, a para since she was 14, is a savvy traveler who knows how to ask the right questions to get the access she needs — and whom to ask. But sometimes people who aren’t as savvy can run into major aggravation, says Kleo King, senior vice president of Accessibility Services for United Spinal. King is also a member on one of the U.S. Access Board’s advisory committees.
Ashley Lyn Olson is passionate about travel.
“People who have a new injury or onset of disease who are now using a wheelchair or scooter may not know they have to specify, ‘I need an accessible room with a roll-in shower,’ or ‘I need a tub,’ and even those who do specify that on their reservation can have it get messed up,” says King.
And yet, even when people know exactly what they need, they still might not get it. “Since the 2010 ADA Standards for Accessible Design, hotel reservations are supposed to be better. They’re supposed to take your request offline, if you use an Internet portal, and have that roll-in shower for you,” says King. “So if someone comes in and demands it, they’re not supposed to get that room. You reserved it, you need it. If all the rooms are booked, then they can call other hotels in the area to get a room, maybe send the customer to the other Marriott, that kind of thing.” But your room that you reserved, with all the specific accommodations you requested, ought to be there when you arrive.
“The bigger chains do better with this,” says King. “Most hotel chains, especially newer ones, do renovations every 10 to 15 years just to upgrade so the property doesn’t look dingy. So most do have what the ADA requires.”
It boils down to customer service, says King. “If there’s a glitch and they’re nice and take care of it, it goes unnoticed. But if the staff is rude, then the glitch becomes worse, which is true whether it’s accessibility-related or if the heat doesn’t work. If the staff isn’t responsive, it ruins your stay.”
What Does the ADA Not Say?
There are some accessibility features the ADA is very specific about: Hotels with over 50 rooms need to have at least three accessible rooms without a roll-in shower and at least one room with a roll-in shower. There are supposed to be unobstructed areas with enough space for a wheelchair user to turn around in a guest room’s bathroom. Regs say how high sinks ought to be, and even address the structural strength of grab bars. And in 2010 the standards were strengthened to assure room reservations are honored. And yet, despite this level of specificity, and despite overall satisfaction with hotel accessibility, there are some glaring areas that need improvement.
There are some accessibility features the ADA is very specific about: Hotels with over 50 rooms need to have at least three accessible rooms without a roll-in shower and at least one room with a roll-in shower. There are supposed to be unobstructed areas with enough space for a wheelchair user to turn around in a guest room’s bathroom. Regs say how high sinks ought to be, and even address the structural strength of grab bars. And in 2010 the standards were strengthened to assure room reservations are honored. And yet, despite this level of specificity, and despite overall satisfaction with hotel accessibility, there are some glaring areas that need improvement.
Take toilets, for example.
“Ya gotta use the bathroom,” says King. “You can’t be on vacation or even have an overnight stay and not use the bathroom. And you want to get up and shower in the morning.”
The lack of consistency from hotel to hotel in how bathrooms are laid out can be odd, says Scott Rains, an international consultant on travel and universal design. “Some of the bathrooms are so tiny or made so weirdly you can’t get in past the door, sinks or toilets. In an accessible bathroom that meets the standards, the height range may not be good for some people. In some people’s opinions, even ADA-standard toilets are not sufficient.” Rains, a C3-4 incomplete quad, lives in San Jose, Calif., and has travelled extensively throughout the world.
To keep accessibility in the U.S. in perspective, Rains talks about how the burning issue in Asia is to get hotels to stop putting in a 3-inch-tall, 1-inch-wide curb between the guestroom’s bedroom and bathroom.
And the list goes on and on.
Yet it’s worth it, says Olson. She keeps accessibility snafus in perspective by reminding herself that, after all, a hotel room is not a destination. It’s a place to stay while she’s exploring the world. “I feel the most connected to the world and alive when I travel — every sound, smell, taste is heightened. I am truly living in the moment and see how truly beautiful and full of love this world really is.”
Resources
• Able to Travel, 888/211-3635; www.abletotravel.org. This travel agency works primarily with people who have disabilities.
• Accessibility Services, www.accessibility-services.com. This team of professional consultants guide businesses such as hotels toward complete accessibility. Like NEW MOBILITY and Able to Travel, Accessibility Services is under United Spinal Association’s umbrella.
• Americans with Disabilities Act Checklist for New Lodging Facilities; www.ada.gov/hsurvey.htm
• Rolling Rains Report, www.rollingrains.com. This site is a good source for the latest info on inclusive travel and the hospitality industry.
• Wheelchairtraveling.com. Wheelchairtraveling.com’s Ashley Lyn Olson travels domestically and internationally, takes lots of notes, and guides fellow wheelchair users interested in similar trips. Also, take a few minutes to view The World of Wheelchair Travel, www.youtube.com/watch?feature=player_embedded&v=xg8-9tK-y_4#t=595.
• Able to Travel, 888/211-3635; www.abletotravel.org. This travel agency works primarily with people who have disabilities.
• Accessibility Services, www.accessibility-services.com. This team of professional consultants guide businesses such as hotels toward complete accessibility. Like NEW MOBILITY and Able to Travel, Accessibility Services is under United Spinal Association’s umbrella.
• Americans with Disabilities Act Checklist for New Lodging Facilities; www.ada.gov/hsurvey.htm
• Rolling Rains Report, www.rollingrains.com. This site is a good source for the latest info on inclusive travel and the hospitality industry.
• Wheelchairtraveling.com. Wheelchairtraveling.com’s Ashley Lyn Olson travels domestically and internationally, takes lots of notes, and guides fellow wheelchair users interested in similar trips. Also, take a few minutes to view The World of Wheelchair Travel, www.youtube.com/watch?feature=player_embedded&v=xg8-9tK-y_4#t=595.
What Do You Mean By Accessible?
NM asked, “Which hotels are best and why?” 210 of you responded with the wisdom of experience.
To gauge what respondents mean by accessible, we asked you to tell us about what’s most important, and gave the following six options:
• Accessible toilets with plenty of space for easy transfers, 165
• Proper bed height, 143
• Roll-in showers, 138
• Accessible parking spaces close to the entrance, 124
• Accessible room close to the elevator or on first floor, 93
• Proper counter height, 60
• Accessible exercise areas, including the pool, 41
• Proper bed height, 143
• Roll-in showers, 138
• Accessible parking spaces close to the entrance, 124
• Accessible room close to the elevator or on first floor, 93
• Proper counter height, 60
• Accessible exercise areas, including the pool, 41
We left a space for “other,” and many of you wrote in that you need room to maneuver as well as space under the bed for Hoyer lifts. Our favorite answer under ‘other’ was a person with post-polio who wants to see “staff that can solve problems.”
But then, in order to get at what is absolutely the most crucial accessible feature, we asked you to choose just one. From this we learned that being able to comfortably use the bathroom in a hotel room (75) is more important than using a roll-in shower (61), but proper bed height is a big deal (39). All other features garnered less than 10 responses each.
Where’s My Room?
We asked which hotel chains are the most reliable when it comes to honoring a reservation for an accessible room and asked respondents to name as many as they wanted. Five percent answered, “none!” but most report having luck with the following chains:
• Hilton Hotels & Resorts. Fifty-five of you responded that the Hilton chain will have your room ready when you check in. Of this 55, Hampton Inn, owned by Hilton, received 21 responses. The Hilton Garden Inn, Embassy Suites, DoubleTree and Homewood Suites each received less than 5 responses.
• Marriott received 42 responses; 35 for the Marriott itself, followed by less than five each for Courtyard by Marriott, Fairfield Inn and Suites, and Springhill Suites.
• Holiday Inn Hotels & Resorts did well by 33 of you; 17 for Holiday Inn, another 15 for Holiday Inn Express and one for the Staybridge Extended Stay.
• Choice Hotels brought up the rear with a low 17 responses. Its Sleep Inn, Comfort Suits and Rodeway Inn each garnered less than five. Comfort Inn received 6 responses.
So what does this mean? First, it’s not a scientific poll. There are other factors to take into consideration, like which chains have the most brands. But some conclusions can be drawn, such as large chains do a better job at honoring reservations. Also, it may mean nothing that some of the smaller brands in a larger chain didn’t get as many responses, since most people book via the Internet, and if you look on the website for, say, Hilton, you’ll see its brands that are near your destination are also pulled up.
We’re the Market, Not a Niche~~Scott Rains
International travel and inclusion design consultant Scott Rains says it’s time for people with disabilities to stop insisting we’re a market niche. “We cross-cut all niches and all demographics,” says Rains. “We cover all economic brackets and we’re traveling for the same reasons everyone else does. We date, we marry, we have families.”
Our survey on hotel and motel accessibility proves Rains’ point. When we asked why respondents travel, 92 of 210 said for family vacations, followed by 68 for couple getaways and 39 for work-related trips. That’s a lot of family members, lovers and coworkers all benefiting from access technically needed by only one person.
We also asked what price range respondents typically aim for when booking a room: 72 said $50-$100, 95 said $100-$150, and 22 said $150-$200.
So much for the stereotype that everyone who uses a wheelchair is impoverished and alone.
What’s It Like When I Get There?
We asked which chains have proven to be the most accessible for you and your family during your travels, and not surprisingly, the answers reflected the same pattern as our question about reliable reservations. But there were some differences.
• Hilton Hotels & Resorts, at 67 responses, smoked the competition, and 27 of these were for the Hampton Inn alone. Hilton Garden Inn, Embassy Suites, DoubleTree and Homewood Suites each received less than 5 responses. Interestingly, those of you who took the survey find Hilton’s accessibility to be more reliable than Hilton’s honoring of room reservations. But keep in mind the survey allowed multiple responses, and some of you chose Hilton and Hampton Inn, thus giving the chain two responses from one person.
• Marriott received 44 responses, and its brands, Courtyard by Marriott, Fairfield Inn and Suites, and Springfield Suites, each received less than five responses.
• Holiday Inn scored 32, with roughly half going to the actual Holiday Inn, and half to the Holiday Inn Express.
• Choice brings up the rear with 17 responses divided pretty evenly between Comfort Inn and Comfort Suites, and a smattering of responses for the Sleep Inn and Rodeway Inn.
A Note About Hoyer Lifts and Mattresses
Hotels are supposed to have room underneath beds to accommodate Hoyer lifts, but David Smart, a C4-5 quad, says many hotels don’t seem to know this. That’s OK. He’s figured out a solution. “There is no Hyatt in the country that has a bed frame that allows for a Hoyer lift transfer,” he says. “At a Hyatt in Santa Rosa, Calif., the manager of the hotel had the frame switched and the bathroom counter skirt ripped out so we could stay there.” Smart says there’s simply no reason for a hotel to balk at swapping out frames. “Frames cost hardly anything — you can pick one up for $40 at Wal-Mart.”
Mattress density is another factor Smart must deal with, due to past troubles with pressure wounds. “At home I sleep on an air bed that’s perfect for me,” says Smart. But I also find memory foam works just fine.” He packs a memory foam mattress topper and brings it with him wherever he and his fiancé go. “The toppers collapse pretty darn well,” he says.
Excuse Me, Does a Ladder Come With That Bed?
When I recently attempted a weekend getaway to Atlantic City, N.J., I found hotel personnel were shockingly uninformed about the very people accessible rooms were designed to service. Some didn’t see the beds as high at all. Others thought we all travel with motorized hoists or musclemen health aides to toss us in at night. One even asked why I couldn’t stand (true!). But most just couldn’t wrap their heads around the concept of someone in a wheelchair needing to transfer laterally onto a bed without assistance.
To make matters worse, the runaround I got trying to find someone to even measure the bed height in an accessible room was a Herculean feat requiring numerous emails and dozens of phone calls. After speaking to everyone from reservation takers to the head of housekeeping, I landed in the voicemail of the executive director of the front office. The gentleman was well aware of the bed-height issue because his elderly mother complained about the very same thing all the time. The solution was one that I had proposed in my very first email to the hotel — if possible, simply remove the box spring and place the mattress directly onto the bed frame.
Of course there’s no such thing as a one-size-fits-all-disabled hotel room, but it’s perfectly reasonable to expect lodgings with accessible rooms to have some kind of provision in place that would allow their staff to quickly lower a bed’s height upon request by a wheelchair user. Unfortunately, there is nothing in the ADA that addresses the bed height issue, so each of us are pretty much on our own in this little battle, but I do have some tips that work for me.
1. Call the hotel directly. Ask for a front desk manager and tell them about your access concerns. For example, if the bathroom has a bath seat, but you need a bath transfer bench, chances are the hotel will know where you can rent one that will deliver to the hotel, often on short notice. Most hotels are happy to work with you, but it may take a few calls to get the right person on the phone. If you get attitude from staff, take your business elsewhere — you will find other places that aim to please.
2. If the bed height is a problem, speak up immediately! Hotel maintenance staff deal with all kinds of problems, including this one. If they seem baffled, try to give them as much information as you can on what you need so they can figure out what to do.
3. Don’t be shy — offer suggestions such as the one I previously mentioned. Removing the box spring and having the mattress sit directly on the bed frame often solves the height problem quickly and with a minimum of hassle.
4. Be a gracious guest. If modifications are made to your bed by maintenance, thank them for their help with a smile (I offer a tip). Showing your appreciation for their time and effort helps pave the way for the next disabled person who needs it done. If you like to write reviews, YELP! is a great online outlet for sharing info — both pro or con.
5. Consider writing letters to hotel bigwigs and associations to let them know that bed heights are a major problem that needs addressing. Government agencies and corporate personnel are often
listed online, so finding them isn’t hard.
listed online, so finding them isn’t hard.
Being disabled means we deal with life’s inconveniences daily and can adapt better than our nondisabled counterparts in odd or difficult situations. By planning ahead and telling people what you need in advance, you not only help yourself, but you help others and create more awareness for all.
New Yorker Jacquie Tellalian’s blog, Norma Desperate: Crippled Spinster in Cyberspace, can be found at normadesperate.wordpress.com. This article first appeared at www.spinalcord.org/hotel-accessibility.
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SPORTS
Tatyana McFadden of US completes unprecedented marathon ‘Grand Slam,’ wins NYC wheelchair race. The Washington Post (11/3)
NEW YORK — American Tatyana McFadden has completed an unprecedented marathon “Grand Slam.”
The 24-year-old Maryland resident won the New York City Marathon women’s wheelchair race Sunday after taking the titles in Boston, London and Chicago in 2013. No other athlete has won those four races in the same year.
McFadden also was the 2010 champion in New York.
Born with a spinal defect and left at a Russian orphanage as a baby, McFadden was adopted by an American family and got involved in swimming, basketball and track. She’s a senior at the University of Illinois.
Marcel Hug of Switzerland won the men’s wheelchair race on Sunday.
Copyright 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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Kill tells players not to follow his unhealthy lead. StarTribune (11/1) by JOE CHRISTENSEN
Gophers football coach Jerry Kill returned to his weekly radio show with 100.3-FM on Thursday and opened up about the latest chapter in his battle with epilepsy.
“I understand my back’s against the wall a little bit; I can’t afford to have any setbacks,” Kill said. “I appreciate that, but I beat [kidney] cancer, and I’ll win this war eventually. And sooner [rather] than later.”
Kill, 52, will remain in the coaching booth at Indiana on Saturday, for the third consecutive game, while Tracy Claeys remains acting head coach. Kill is gradually doing more of his old responsibilities, but said he knows he needs to cut back.
He said it’s hard putting into words how he felt when he woke from the seizure that kept him from making the trip to Michigan on Oct. 5. After visiting an epilepsy treatment center in Grand Rapids, Mich., Kill went to see the Gophers walk-through on Oct. 18, before the team flight left for the Northwestern game.
“I told them, ‘Men, I’m a good example of all the things you don’t want to do. I’ve always told you, ‘Get your sleep, make sure you eat at the right times, and [don’t take] drugs.’
“So I said, ‘Your coach is an example of not getting any sleep, not eating properly, and then through all the different kinds of medication, the chemistry wasn’t good.’ ”
Recruiting peaking
After the Northwestern victory, Kill began calling recruits, and he said every player who committed to the Gophers has stuck with them.
“Recruiting’s going better than it ever has since I’ve been here,” he said. “But beating Nebraska probably is part of it. Winning solves a lot of problems.”
Kill said it was important for recruits to hear directly from him. His message: “I don’t know what you heard, but I’m going to be coaching for a long time, I can promise you that. And if I’m not, I’ll pick up the phone and call you. I’m not going to lie to you.”
Kill said, “They respect that I’m not trying to hide from what it is.”
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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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