The Crisis in Home Care Will Assistance Disappear?

Overcoming Depression Martial Arts Exec Darren Brehm
The Crisis in Home Care
Will Assistance
Disappear?
life beyond wheels
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M3264N 05.15
CONTENTS
June 2015
VOLUME 26 NUMBER 261
F E AT U R E S
life beyond wheels
17 SUPER EXEC
Darren Brehm has figured out not only how to manage as a high
quad, but how to thrive in the business world. BY IAN RUDER
23 GET TOUGH
Martial Arts for wheelchair users may seem like an oxymoron, but
its time has come. BY LINDA MASTANDREA
49 BUCK UP Major depression can take you down and keep you down. But there
are ways you can beat it. By TIM GILMER, BOB VOGEL and RICHARD HOLICKY
C O V E R S TO R Y CRISIS IN PERSONAL ASSISTANCE 28
It is a delicately balanced equation: not just a client-worker relationship, nor simply a contractual
obligation, nor only a friendly arrangement. It is interdependency to the max, and it is being threatened
by the need for change. The Department of Labor wants all personal care workers to receive at least
minimum wage and overtime. It seems only fair, but could it bring on more problems than
solutions? JOSIE BYZEK reports.
Cover and Contents Photos by Jason Minick/Minick Photography
D E PA R T M E N T S
4
5
6
8
BULLY PULPIT
CONTRIBUTORS
LETTERS
NEWS
10 EVERYDAY ADVOCACY
12 SCI LIFE
41
42
56
58
63
64
SPOTLIGHT
UNITED SPINAL NEWS
INNOVATIONS
RAISING A RUCKUS
CLASSIFIEDS
CRIP BUZZ
BULLY PULPIT
life beyond wheels
JUNE 2015
NEW MOBILITY IS THE
MONTHLY MAGAZINE OF
PRESIDENT & CEO: JOE GASKINS
VICE PRESIDENT OF PUBLICATIONS:
JEAN DOBBS
EDITORIAL
EDITORIAL DIRECTOR: JEAN DOBBS
EDITOR: TIM GILMER
MANAGING EDITOR: JOSIE BYZEK
SENIOR EDITOR: IAN RUDER
SENIOR CORRESPONDENT: BOB VOGEL
ividuals with spinal
cord disabilities
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4
NEW MOBILITY
Specialized Rehab and TBI
One year ago my nephew, Nick, sustained
a traumatic brain injury from a freak accident. He began emerging from a coma
two months later. Three months following his accident, Nick’s trach tube was
removed, and he began standing with
help and receiving initial speech and
physical therapy. He looked like he was
on his way to recovery. But his insurance,
a very limited HMO, had no TBI treatment
centers in their network. So they sent him
to a general rehab facility where people
go after they have had knee or hip surgery
and other common conditions that require
physical therapy.
The first week there, Nick’s brain
became infected with meningitis and
cerebritis, probably due to a fall from bed
a few weeks earlier in the long term acute
care facility the HMO had sent him to after
being discharged from the acute care hospital. He was the youngest resident among
older respiratory residents at the LTAC,
many of whom would die there.
The brain infection was devastating,
and after three surgeries, he remains bedridden in a nursing home, paralyzed, back
on a trach and feeding tube, intermittently
conscious. His wife, 22-year-old son, two
teenage daughters and youngest son await
the day he will regain full consciousness
and, hopefully, return to them.
He is not without hope. He has shown
signs of responding to loved ones, friends,
and caregivers. But even if he regains
full awareness, he may not be able to
gain access to what he needs to function
independently, or interdependently. I’m
talking about the need for him to receive
full services from a TBI treatment center
— physical therapy, respiratory therapy,
speech therapy, occupational therapy,
neuropsychiatric therapy, counseling for
him and his family, and more.
Just getting admitted to a rehab facility
that specializes in TBI is difficult. And those
who have the greatest need — the most
severely injured — have the least chance
of gaining admittance. Our health care
system, made up of so many talented and
dedicated doctors, nurses and therapists,
is on a leash — controlled by outdated
Medicare policy and private insurance
companies whose fickle allegiance to
patients is determined by cost more than
medical need.
Those of us who have sustained spinal
cord injuries know how important it is to
get the benefits of specialized rehabilitation. But most of us don’t fully appreciate
how much more rehab TBI survivors need,
and how critically important it is for them
to be stimulated in every way to re-awaken
the brain and re-engage it with all organs,
limbs, senses, bodily functions, surroundings — everything that makes us human.
If we had a law mandating that severe
TBI survivors must receive the full services
of a TBI treatment center instead of being
given second- and third-class care from
long term acute care hospitals and nursing
homes, Nick and others like him — including many vets with war-related TBIs —
would have a fighting chance to recover.
Those of us with SCI know just how
critical specialized rehab can be. Our fellow
TBI survivors deserve the best treatment
possible — sooner rather than later.
— Tim Gilmer
CONTRIBUTORS
life beyond wheels
JUNE 2015
Our managing editor Josie Byzek’s dedication to disability rights
is deep-rooted and enduring. She cut her teeth as a reporter for
the advocacy publications, Mouth and Ragged Edge, and currently is a board member for the Center for Independent Living
of Central Pennsylvania. She lives with her partner, Ginny, in
Harrisburg, Pa., and is raising two of her nephews, Nick and Tony.
When not sounding off on Facebook, she can be found in her
garden or at the local nature preserve.
Bryan M. McCormick is a vocational rehabilitation counselor
and president of the United Spinal Association of Western
Pennsylvania. He also serves as a peer mentor and group leader
at UPMC Mercy Hospital, where he helps guide individuals on
the SCI unit. Bryan is an active disabled athlete. He is a competitive rower, has been participating in adaptive skiing for nearly 14
years and has recently started competitive handcycling. Bryan
has since completed a multitude of 5ks and marathons.
Linda Mastandrea is a disability law attorney, consultant on emergency management and disability issues, Paralympic gold and
silver medalist, advocate and speaker. She is also fund manager
for the newly created Persons with Disabilities Fund that will support projects that improve the lives of people with disabilities. A
frequent contributor to New Mobility and blogger on topics related
to wellness, aging and disability, Linda lives in Chicago with her
husband Jesse, cats Payton and Luna, and dog Lucy.
FEATURED PARTNER
A pioneer in wheelchair racing, Marty Ball ran 47 marathons and
hundreds of road races in the days before high-tech racing chairs.
He sold wheelchairs for Mobility Unlimited, Motion Designs
(Quickie), and Kuschall, then started up TiLite in 1990 with three
others. He also formed Users First to provide a tool for wheelchair
advocacy. In 2013 he retired from TiLite as vice president of sales,
but remains active. A respected and influential advocate, he will
attend his 4th Roll on Capitol Hill in June. He lives in Fort Myers,
Fla., with his assistance dog, Cody, and often travels to visit his
children, grandchildren and great-granddaughter.
CONTRIBUTING
EDITORS
MICHAEL COLLINS
MIKE ERVIN
ROXANNE FURLONG
RICHARD HOLICKY
PRISCILLA MALTBIE
ALLEN RUCKER
ROBERT SAMUELS
ERIC STAMPFLI
ELLEN STOHL
BOB VOGEL
LOREN WORTHINGTON
COMMUNITY PARTNERS
KIM ANDERSON
CHRISTIAAN “OTTER” BAILEY
MARTY BALL
FINN BULLERS
TIFFINY CARLSON
LAWRENCE CARTER-LONG
RORY COOPER
JASON DASILVA
DEBORAH DAVIS
TOBIAS FORREST
JENNIFER FRENCH
ALLISON CAMERON GRAY
MINNA HONG
MARK JOHNSON
GARY KARP
NANCY BECKER KENNEDY
BRITTANY MARTIN
LINDA MASTANDREA
LYNN MURRAY
ASHLEY LYN OLSON
SCOTT RAINS
TEAL SHERER
MITCH TEPPER
REVECA TORRES
ANTHONY TUSLER
KARY WRIGHT
JUNE 2015
5
Cars I Have Loved Sydney on Wheels Disabled Detectives
Second Chance
Rehab
LETTERS
life beyond wheels
Find a SCI-FIT type of rehab, and you
will never regret the expense.
newmobility.com
Reset Priorities
PPS Antidote?
Great piece! This intensive exercise
approach by ADAPT, Project Walk, and others is a lifesaver [“Second Chance Rehab,”
April 2015]. My wife, injured at C5-6
incomplete, was lucky to discover SCI-FIT
in Northern California It gave her hope,
and the staff are now family. She is now a
“walkin’ quad” and no doubt will see more
independence as a result of this type of
therapy. My advice to anyone with mobility
struggles, be it from SCI, multiple sclerosis,
stroke or whatever, is find a SCI-FIT type of
rehab, or help start one, and you will never
regret the expense. You will reset your priorities to make it a part of your life.
Carey Chenowith
Sausalito, California
This story [“The Cars in My Life,” April
2015] is a refreshing reminder that the
automobile, in whatever incarnation, is the
best antidote for our post-polio sequelae
symptoms.
Barbara Lee
Adelphi University
Brain in a Bottle
My wonderful wife Debra researched a
bunch last year and discovered ADAPT
[“Second Chance Rehab”]. Just today I
was up there for my session, even though
this does involve a five-hour round trip
drive with six stops for weight shifts (I am
labeled a quad with a need for tilting my
chair to minimize skin breakdown). My
physical therapist is Orlando, and for the
last few months I have been impressed
with his skill, creativity and great sense of
humor. I do not approach this more active
form of exercise with false hope, though
the sky is the limit. For me, even if nerves
do not wake up, I definitely feel stronger.
As I pointed out after my first session, during my two years after my injury I have
felt a bit like a brain in a glass bottle. I am
grateful to find ways to move my body and
exercise my body. In fact I was surprised to
discover these avenues. Thanks, ADAPT!
David W. Oaks
Harvard University
6
NEW MOBILITY
‘Can Do’ Quad Detective
Bryce Clarke has always been a “can do”
person and is always looking for ways to
improve his environment for the benefit
of everyone [“Portrait of the Detective as
a Real Person,” April 2015]. His input into
the Council on the Status of Persons with
Disabilities courses was very helpful and
made people try to go that extra step. Way
to go, Bryce!
Terry Jordan
Portage College
Sydney in September
So glad that Cory Lee had a great accessible time in Sydney [“Accessible Sydney,”
April 2015]. You can also add springtime, which occurs September through
November in Australia, as a great time
to come here. Before coming, check out
when our school holidays are — any time
outside those are good for cheaper flights
and accommodation.
AccessAbility Travel
The Value of Giving Back
As I read the Bully Pulpit about turning 70
[“Geezer Wisdom,” March 2015] I found
that much of it sounded familiar. I was
injured 30 years ago — T3 complete —
and also took a couple of years to “find
myself.” I went to vocational rehab and was
told after a psych evaluation that I could
do anything I wanted. So much for the
APR 2015 $4
value of psychologists. Anyway, I decided
to try teaching, which I had done about 15
years before my injury. I ended up teaching
chemistry at the high school level for 24
years and just retired a couple of years ago.
I, too, am 70.
Turns out that I miss the kids. So, I
am volunteering at the high school. That
wasn’t enough. I said I’d never be an
adjunct prof because they pay slave wages,
but I thought I had something to teach the
next generation of science teachers. So, I’m
now doing that at Temple University.
You gave us good advice in your column, but may I add that giving back and
doing for others helps one feel needed and
useful, and that helps make life worth living.
Allen Bronstein
Elkins Park, Pennsylvania
A Mike Sandwich
When I was in graduate school finishing my
master of fine arts in creative writing, I only
had a few classes to take before I received
my degree, but one class was located on
the third floor of a decrepit building with
no elevator [“Elevator Tales,” Bully Pulpit,
April 2015]. My instructor was named Mike
and my husband is named Mike, so we
devised a plan to get me to the third floor.
Instructor Mike walked in front of me and
husband Mike walked behind. They picked
me up and carried me. I was between them
as a sandwich, so the Mike sandwich very
carefully walked step-by-step up to the
third floor, and we did the reverse coming
down, and I did get my degree. I do not
recommend this method, but it did work. I
cannot say that it was safe, but I got there
and got back, without falling, and ready to
receive my master’s degree.
Diane Hoover Bechtler
Charlotte, North Carolina
NEWS
By Mark J. Boatman
Luxury Bus Service Leap Will
Restore One Lift
Advocates were infuriated to discover San
Francisco’s new luxury bus service, Leap,
disabled all of the wheelchair lifts in its
entire fleet. Some are discussing filing a
lawsuit and Chris Pangilinan, a former San
Francisco transportation engineer, filed a
complaint with the Department of Justice
in late March. In response to this backlash,
the company says it will restore at least
one wheelchair lift on one of its buses.
Wheelchair access was removed to make
way for swanky seating.
“One bus with wheelchair access is
inadequate — no nondisabled customer
would expect such limited options so
why should we?” asked Alice Wong, a San
Francisco-based disability scholar best
known for her Disability Visibility Project.
It appears the lifts and other accessible
features were removed to make room for
bar seating and leather armchairs, but
Wong thinks the dismantled accessibility is an unspoken selling point. “A lot of
nondisabled people roll their eyes and
give a heavy sigh whenever a wheelchair
user boards the bus because of the extra
precious minutes of their time wasted. In
creating an inaccessible option, Leap is
giving people the option to avoid ‘undesirables’ like me.”
One of the first to break the story
nationally, Wong’s initial tweet on the
subject was “MAKE HULK ANGRY.”
Marilyn Golden, a senior policy analyst with the Disability Rights Education
and Defense Fund, calls Leap’s behavior
deplorable. “It actually took vehicles that
were accessible and rendered them inac8 NEW MOBILITY
cessible, which is both a violation of the
Americans with Disabilities Act’s requirement for maintenance of accessible features and also a terrible slap in the face of
the disability community,“ she says.
The ADA mandates public and private
transportation services be wheelchair
accessible. Leap claims it isn’t a transportation service. Golden says that claim
makes no sense. “It has a fixed route that
runs according to a fixed schedule and
that makes it a fixed route system under
the ADA,” she says.
Leap began operating in March with
transportation options targeting affluent
young urban professionals. Each Leap bus
offers comfortable seating, USB hookups,
WiFi and food for purchase. Each fare is
$6 and riders can arrange trips from a
convenient smart phone application.
New Mobility made numerous attempts
to contact Leap for an interview but
didn’t receive a response. The company
recently apologized to the disability community: “We are removing seats from one
of our buses that still has a working ramp
to make room for disabled commuters. In
the future, these considerations will be a
high priority during our design process.
We’re sorry to anyone we’ve offended
and we hope to do a better job next
time,” said Leap CEO Kyle Kirchhoff in a
statement.
asked Canales for his transit identification card that would verify his disability.
“They were checking everybody on that
sidewalk, so we were happy to oblige and
show them our passes and I didn’t have
sufficient proof for them,” says Canales.
Because Canales couldn’t produce
identification, the officer confiscated his
bus pass. “I was shocked for a moment
and then the spirit just kind of took over
and I knew I had to get this on camera,”
he says. Canales tried to explain he
never purchased identification because
he thought being in wheelchair was
proof enough. “I understand if you don’t
have an obvious disability they need to
check but I think for the rest of us there
shouldn’t be a separate ID.”
Canales posted the video to his
Facebook account and it quickly went
viral with over 800,000 views in one week.
San Diego Transit Yanked Wheelchair
User’s Discount Fare Card
A San Diego man is battling the local
transit system after Metropolitan Transit
System police confiscated his discount
fare card, saying he couldn’t provide sufficient proof he was disabled. He’s a lifelong wheelchair user due to a spinal cord
injury from a blood transfusion at birth.
Joey Canales, 31, takes MTS to his job
at the San Diego YMCA and has ridden
for 12 years without a problem until April
10 when an MTS officer approached him.
The officer said MTS was cracking down
on fraudulent discount fare cards and
A wheelchair user, Joey Canales thinks it’s
pretty obvious he has a disability.
The outcry over the MTS policy has garnered support for Canales from around
the globe.
MTS stands by its policy of requiring wheelchair users to prove they’re
disabled. “Rather than have our officers
make judgment calls in the field as to
who may or may not be disabled, our
People in the News: Steve Gleason Act Passes the Senate
T
he Steve Gleason Act of 2015 unanimously passed
facilities such as nursing homes
the U.S. Senate on April 22 and is expected to have a
• Ensures eye tracking technology and gaze interaction
good chance at passing the House. The Act will make it accessories are covered under Medicare for people with ALS
easier for people who have ALS and other speech-impacting
and others with demonstrated medical needs.
disabilities to obtain Medicare funding for speech-generating
“Communication is one of the most powerful tools
devices and eye-gaze technology.
humans possess, and is often taken for granted,” Steve
“Living with ALS is a tremendous challenge. Our bill will
Gleason said in a statement. “When you lose the ability to
help empower people with ALS to live and work more indemove and speak, communication becomes not only empowpendently and give them an opportunity to communicate
ering, but also life sustaining. I have always said, until there is
with their loved ones,” said Sen. David Vitter of Louisiana in
a medical cure for ALS, technology can be that cure.”
the New Orleans Times-Picayune. Vitter, a Republican, introThe legislation is still pending in the House but the bipartiduced the bill along with co-sponsors Sen. Amy Klobuchar,
san effort is likely to gain passage.
a Democrat, from Minnesota and Sen. Angus King, an
independent, from Maine.
The Steve Gleason Act of 2015, is named after the
former New Orleans Saints football player who was diagnosed with ALS in 2011. It provides for the following:
• Gives immediate relief for people who have been
denied access to speech generating devices since a
Centers for Medicare & Medicaid Services rule change
in 2014
• Ensures SGDs are classified as medically necessary
and are categorized as “routinely purchased” under
Steve Gleason
Medicare
• Reverses the CMS capped rental policy to allow
people to own their devices and continue using them in
policy is for people with discounted fares
to carry proof of eligibility and supply it if
asked,” MTS spokesman Rob Schupp said
in a statement.
Canales wants to work with MTS to
find a solution but their past track record
doesn’t give him much confidence. “Even
if there weren’t media attention they
don’t have a reputation of weighing
people’s options,” he says. “They do have
meetings but I’m yet to meet anyone who
goes to those meetings who feels that
they were actually listened to.” He is considering legal action.
Los Angeles Will Fix Crumbling,
Inaccessible Sidewalks
After years of legal wrangling, the City of
Los Angeles reached a tentative settlement with disability advocates for a
record $1.4 billion. The April 1 agreement
will fix crumbling sidewalks that have left
wheelchair users without the adequate
public access guaranteed under the
Americans with Disabilities Act.
“I’m pleased with the settlement
because this is a result of a valiant effort
of our people who insist that sidewalks
have to be made accessible,” says Lillibeth
Navarro, a plaintiff and executive director for Communities Actively Living
Independent and Free. “We’re very grateful that a group of competent lawyers
have taken on an issue that has long been
ignored.“
Under the terms of the settlement
that must be approved by a judge, the
city has 30 years to repair or replace damaged sidewalks. It must spend $31 million
annually on sidewalk improvements starting next year with a gradual increase to
$63 million in future years. The city must
also pay $15 million in attorneys fees and
costs.
The lawsuit, filed in August 2010 by
CALIF and several disability advocates,
alleges the city discriminated against its
residents with disabilities by:
• Not fixing sidewalks in disrepair
• Not fixing sidewalks with too-steep curb
cuts
• Not removing obstructions such as signs
and trees that blocked sidewalks
• Not ensuring adequate access via sidewalks to public transportation.
It’s estimated that 40 percent of city
sidewalks need repairs. Broken sidewalks
have also caused numerous accidents for
Los Angelenos, as the city has spent more
than $6 million in trip-and-fall payouts
since 2011, according to the city attorney’s office.
“This settlement is an enormous step
forward for the City of Los Angeles and its
residents,” Councilmember Paul Krekorian
said in a statement. “For decades, buckled
sidewalks have plagued neighborhoods
from the San Fernando Valley to the
South Bay. All of that is going to change
starting today with the city’s historic commitment to fix our sidewalks and make
them accessible.”
JUNE 2015
9
EVERYDAY ADVOCACY
Changing Hand Controls
By Michael Collins
Q. We recently bought a van from a used
car lot. Since I use a wheelchair and needed
to get hand controls installed at a place
that has certified installers, I called a company that sells them to get a quote. They
said they would not do the work unless I
gave them a certificate from my driving
school showing that I am legal to drive with
hand controls. My driving school closed
about 15 years ago, and the back of my
driver’s license already states that I must
drive with hand controls.
A nearby dealer also said that they
would not do the hand control installation
unless I have the training, and it doesn’t
matter that my current sedan has them.
Fortunately, I found another business that
did the installation, without any problems
or additional documentation of training
beyond what was on my driver’s license.
When did this start happening? Is this a
recent requirement? I have since heard that
it is a state law. I’ve had five prior vehicles
and a clean driving record and never been
challenged in this manner. What advice
would you give if this should happen again?
— Frustrated in California
S
eeking an answer for you
required an extensive search
involving dozens of individuals
who drive with hand controls or
their family members, several companies
that install hand controls, and some
driver rehabilitation specialists. It turns
out that you are not alone in your frustrations, and it also seems that your situation was mishandled by the company
you contacted initially.
First, know that you did the right
thing by exercising the power of the consumer and finding another company to
do the work. While that would obviously
10
NEW MOBILITY
be more difficult for people living in rural
areas, your negative experience can be
shared with your circle of friends so they
can take that into consideration when
searching for someone to do similar work
on their vehicles in the future. There
should be financial consequences for
poor customer service.
As a customer, you also have the
right to ask why a particular decision
is being made by the business that is
refusing to serve you. If they say it is
because of some vague law or similar
policy, ask to see a copy of it. Should the
denial originate from an employee, ask
to speak to the manager. The situation
you faced can occur because individuals
share misinformation.
Several respondents on New Mobility’s
Facebook page stated that they had
faced similar discrimination, but those
who were told that it was because of
some rule or “law” did not provide
enough information to actually identify
such a law. State or provincial driver’s
license agencies do have regulations
regarding hand controls, but usually they
involve only a doctor’s approval and an
endorsement on the driver’s license.
The specialists I discussed this with
said it is common practice to request
an evaluation by a driver rehab specialist under certain circumstances. These
include: if someone has not driven with
hand controls for an extended period;
is moving their hand controls to a new
type of vehicle; has a progressive condition which might impact strength or
driving functions; or is changing the type
of hand controls that they use. Since you
were switching from a sedan to a van
with the same hand controls, a company
doing the installation might be justified
in requesting an evaluation by a DRS.
They should also be willing to explain
their decision to you if requested.
A DRS may be affiliated with a driving school, but an evaluation is different
than driver training. To earn their certification, DRS candidates are tested by
the Association for Driver Rehabilitation
Specialists to assess the following: If a
person is capable of driving, if additional
driver training is necessary, and to determine the length of training needed. A
driver evaluation generally consists of
a clinical assessment and a behind-thewheel assessment. If the vehicle modifications or hand controls are being funded by a government agency (such as Voc
Rehab, Veterans Affairs or workers comp),
they usually require a DRS evaluation to
assure that they are supporting installation of the proper assistive equipment.
The National Mobility Equipment
Dealers Association is the organization
that includes most of the companies that
sell modified vehicles and/or install hand
controls and similar assistive devices.
While they may request an evaluation
first, I could find nothing in the NMEDA
guidelines, or those of the ADED, that
would prevent a dealership from complying with your request to install hand
controls in your van.
Resources:
• National Mobility Equipment Dealers
Association, www.nmeda.com
• Association for Driver Rehabilitation
Specialists, www.ADED.net
• U.S. Department of Veterans Affairs,
va.gov
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SCI LIFE
By Tiffiny Carlson
“I am thrilled to
utilize my love
of writing and
editing in order
to directly impact
this strong
community of
disabled women.”
Coming Full Circle
One look at Cheryl Price’s life and
you may forget she uses a wheelchair. This is a hallmark of her life,
one her family instilled in her from
the very beginning when she was
injured at birth and premature by
three months.
“My family’s determination and
unwavering belief in my survival
are major factors for what got me
through a very uncertain couple
of years,” she says. Price, 38, was
born with a C8-T1 injury in the
1970s, a time when such serious
spinal cord injuries in babies did
not seem survivable.
But she not only survived, she
thrived, and because she lived her
childhood with a disability, she
was able to transition seamlessly
into life as a disabled adult. “I was
raised to be as independent as
possible, which I believe helped
me with my confidence as I
matured.”
Originally from Stamford,
Conn., she decided to attend
12
NEW MOBILITY
the University of Miami to study
editing and writing. For 10 years
afterwards, she was the editor of a
local entertainment magazine in
Miami. She is also a board member for mobileWOMEN, a nonprofit dedicated to educating and
empowering women with spinal
cord injuries. She is currently the
managing editor of their site.
“I am thrilled to utilize my love
of writing and editing in order to
directly impact this strong community of disabled women,” Price
says about her work. Also, wanting to fulfill another lifetime goal,
in 2008 she gave birth to her son
Parker. “I had a blissfully uneventful pregnancy,” she says, crediting
her OBGYN, Dr. Salih Yasin, who
has a lot of SCI-and-pregnancy
experience.
With a life that keeps on rolling, Price proves to the world that
a wheelchair needn’t hold us back
in the least, and we love her for it.
Visit www.mobilewomen.org
Digitally Sharing Their Love
Steph Cox is not only the wife of Ben Cox,
a C6-7 quad from Lubbock, Texas, she’s the
voice of Life with a Disabled Husband, a noholds-barred blog on their married life. Ben
met Steph right before being injured in a daredevil skiing accident in 2011, and the two were
married last year. After the wedding, Steph
decided to share their life by starting a blog
describing their highs and lows. She posts
about what she appreciates most about being
married to Ben, and she also writes about their
less glamorous moments — like her needing
help with bills and his learning how to be OK
with asking for help.
In a sea of SCI relationship blogs, this is one
of the best. The honesty found on Life with a
Disabled Husband can’t be beat. Their frank talk
on the reality of relationships could help many
AB/SCI relationships. Check it out at www.lifewithadisabledhusband.wordpress.com.
Canada’s Accessibility Hawk
Timothy Maxwell, a passionate wheelchair user
in Edmonton, Canada, is all about enlightening those living in his city regarding the daily
inaccessibility issues of wheelchair users. Called
Mightywheels, his blog profiles inaccessibility
issues from using entrances to curb cuts, and it
also shares some keen insights from the author.
Click on www.mightywheels.blogspot.ca
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EAT WELL, LIVE WELL
Healthy Coconut Cooler
Summer is almost here! It’s hot, and you’re
busy, so you want to make sure you stay
hydrated. A spinal cord injury affects your
temperature regulation, especially if you
have a cervical injury, so ensuring you get
enough liquids is extremely important to
replenish lost fluids and help maintain temperature control.
Staying hydrated is also important to
maintain your energy level and skin integrity, and for you hard-core athletes who are
doing intense physical activity for an hour
or more, you must sustain your electrolyte
balance. Electrolytes are essential minerals
in your blood and other body fluids that
carry an electrical charge. People who are
working intensely in heat can lose up to 2.5
liters of perspiration in an hour. When we
sweat, we lose electrolytes and depending
on how much we lose, there can be concern over electrolyte imbalances, so these
must be replaced. It’s vital that the balance
of electrolytes in your body be maintained
because they affect the fluid balance in your
body, blood pH, muscle action and other
important body functions.
The first thing many people reach for to
re-hydrate themselves in the summer heat
is a cold, colorful sports drink. While these
may help keep you cool and replenish your
electrolytes, they are loaded with artificial
flavors, colorings and refined sugar. Instead,
next time you need to quench your thirst, I
highly recommend a natural isotonic drink
that is more delicious and much healthier
than almost all other beverages on the market — coconut water! This amazing drink,
made from the water that is naturally filtered through the coconut husk as it grows,
has these health benefits:
It contains less fat than milk and has no
cholesterol.
14
NEW MOBILITY
It has fewer calories than fruit juices
— one 8-ounce glass of coconut water
contains 45 calories versus 110 calories for
orange juice.
It has less sugar than other sport/energy
drinks and soda — and the sugar it does
contain is natural.
There is more potassium and less sodium (electrolytes) in coconut water than in
most sport/energy drinks.
It contains calcium.
It doesn’t contain any artificial flavors,
coloring, or preservatives.
So when you’re feeling the heat this
summer, refresh yourself with this healthy
coconut water mocktail.
Joanne Smith and Kylie James are coauthors of the book, Eat Well, Live Well with
SCI and Other Neurological Conditions. For
more information on nutrition for neurological
injuries, go to www.eatwelllivewellwithsci.com.
By Joanne Smith
and Kylie James
Coconut Mocktail
5-6 pieces fresh mint leaves
1 cup coconut water
Handful of ice
½ cup pineapple juice
Mix it all together in a tall
glass and go nuts!
4 slices lemon
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DARREN BREHM
Climbing
the Ladder
of Success
B Y
I A N
D
R U D E R
arren Brehm remembers what
it is like to look up at the corporate ladder and feel like even
the bottom rung is out of reach
from your wheelchair. In 2002, nine years
after a rollover car accident made him a
C4-5 quad, Brehm had adjusted, gotten
married, started a business and graduated
from college. Yet still, he didn’t see a way
to start climbing.
“I had very low self-esteem regarding my spinal cord injury as far as how
do I apply for a job,” he says. When do
you tell employers you are in a wheelchair? What accommodations do you
ask for? Are they really equal opportunity employers? What if my disability
scares them away? The questions raced
through his head. “I found myself wondering, ‘How am I going to be successful
in a corporate environment?’”
He started his climb with a job at Boeing in 2002 and hasn’t looked back since.
He went on to graduate from Harvard
Business School, work at one of the world’s
most demanding consulting firms and
currently works for one of America’s largest grocery manufacturers, all while raising
a family. He’s learned how to thrive in the
corporate system while overcoming the obstacles a spinal cord injury can present. The
philosophy that has helped him succeed
is pretty straightforward. “I don’t identify
myself as a quad or anything like that. I’m
just Darren, a guy that had a spinal cord injury a long time ago … I’m going to work
Balancing the corporate and family life is not easy, but Darren Brehm is
figuring it out. Sometimes he calls on family to help him in the office – but
he’s getting the job done and still finding time to be Dad.
really hard and I’m going to try to be the
same guy I was, just sitting down now.”
Finding His Niche,
Making a Mark
Brehm’s injury in 1993 forced him to
withdraw from San Diego State following
his sophomore year, but it didn’t dampen
his natural entrepreneurial tendencies.
He mastered working with computers
and got into building and repairing them
and designing websites. He started a business buying pinball machines in Europe,
shipping them back to the United States,
refinishing them and reselling them. He
even launched his own “.com” business.
Around that time, his wife, Faith, who had
JUNE 2015
17
been injured in the same accident with
Brehm and whom he married in 1996,
pointed out that he seemed to have rehabilitated himself and suggested maybe it
was time to return to school.
Brehm quickly found confidence in
his abilities at community college and
transferred back to SDSU to finish his finance degree. He graduated as the Internet
bubble burst and the economy tanked. He
credits a mentor for helping him overcome
his insecurities about applying for a job as
a wheelchair user in a market where jobs
were scarce. “He said, ‘Darren, you just
need to get some job experience. It doesn’t
matter where it is; you’ve just got to go get
some experience.’” Brehm ended up applying “to every company I could” before
landing a job on the finance team for Boeing’s defense program.
Immediately his concerns began to
fade away. “I found that when I went to
Boeing, there really weren’t any constraints — just like there hadn’t been any
in school,” he says. “They said, ‘What do
you need?’” Brehm got the height-adjustable table, trackball and Dragon software
he needed and found the company had no
As a businessman with an international company, Darren travels more than most people.
This photo was taken during a recent trip to
Shanghai, China.
problem with Faith checking in occasionally to help with food and restroom needs.
“I found that at Boeing I was able to leverage the same tools that made me successful
at school and at home, which is technology,”
says Brehm. “I became a pretty quick expert
in tools like Excel, and the computer really
became my enabler. I became an expert at
Boeing and I went from being the guy that
nobody wanted because I was a wheelchair
guy to being [in demand].”
With a better understanding of the realities of the corporate workplace, a growingly confident Brehm quickly realized
that his salary and California’s pricey economy weren’t a good match. Despite having
lived his whole life in California and having all his family there, Brehm moved east
to attend Harvard Business School. He got
his degree while Faith finished hers at the
University of Massachusetts – Boston. A
happy Brehm found himself facing another
dilemma upon graduating: return to Boeing, where the company would repay his
student debt and he would be comfortable,
or join McKinsey, one of the world’s largest
and most demanding consulting firms.
Again, sage advice from a mentor
helped him choose his path. Brehm approached a professor he respected with his
dilemma. She drew a parallel between her
experience as a lesbian in the workforce to
his as a wheelchair user.
“She said, ‘You know Darren, the world’s
not a fair place. You’re in a wheelchair and
I’m a lesbian, the discrimination is real and
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NEW MOBILITY
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we’re not going to change that overnight.
But you’ve got this really pretty resume and
a nice story. You go to work at McKinsey
for a couple of years, nobody is going to
question your disability ever again. You’ve
only got to suck it up for two years and it
would be really good for your career.’”
Brehm accepted McKinsey’s offer and
he and Faith moved to Chicago for the
next step in his education. Over the next
three and a half years he worked 65-80
hours a week, often traveling up to four
days a week. That’s a heavy load for anyone, much less a high quad.
A Family Man
Rises to the Top
Early on at McKinsey, Brehm realized
his previous setup, with Faith and attendants coming in to assist him, wouldn’t
work for McKinsey’s rigorous schedule.
“My friends were like, ‘What are you doing, dude? Why is your wife helping you
at McKinsey?’ I thought, I don’t have a
choice; the job is so good I don’t want to
say anything. They said, ‘No, dummy, you
should say something.’”
Finally he did, and to
his surprise McKinsey agreed to provide
$50,000 per year so he
could pay attendants.
He hired his mom, and
she moved to Chicago
and spent the next two
and a half years traveling with him and helping him. “That’s what
private firms can do,” he
says. “The unique thing
about that experience Darren and his wife, Faith, are shown celebrating the most recent
was that they would just birthday of their 4-year-old fraternal twins, Teagan and Sophie.
value the brain. The brain is doing what assistant, but the company did agree to pay
they want, and they’ll bend over back- for travel assistants. In 2013, Brehm was
wards to accommodate that. They don’t promoted to director of procurement for
answer to anybody but the partners, so North American ingredients. He manages
a $950 million budget and a team of 13.
they make the decisions.”
Despite the positive setup, with twins on “You don’t hear many people say, ‘When I
the way, Darren and Faith knew the long grow up, I want to work in procurement,’
hours and crazy travel wouldn’t work, and but I find it tremendously satisfying,” he
in 2011 Brehm took a job as an associate said in a profile for SDSU.
director with Kraft Foods in the Chicago
Managing work and the growing dearea. The $50,000 budget was no more, and mands of having a family is a continual
Brehm wasn’t senior enough for a personal challenge. Not being able to help Faith
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R
A Coworker’s View
ob O’Brien has worked for Brehm
the last two years at Kraft and says
the secret to his colleague’s success is
simple. “He’s a really smart guy who
doesn’t micromanage. He sets a high
level of direction and says, ‘Hey, get
there,’ and he’s there for you if you need
any help along the way.” Together,
Brehm and O’Brien are part of Kraft’s
ingredient procurement unit and are
responsible for sourcing and purchasing
the many ingredients Kraft needs to fuel
its global enterprise.
O’Brien, like many Americans, had
never worked with or for a wheelchair
user prior to working for Brehm, but
says his boss made him feel comfortable by the end of his initial interview.
“He was very open and direct and told
me about using a wheelchair and how
he got injured. He addressed it up front
and it just didn’t seem like a big deal.”
20
NEW MOBILITY
That openness also manifests in how
Brehm works with his staff. “You can
come to him with any idea or proposal
— however crazy — and he’ll help you
think through it,” says O’Brien. “He’ll tell
you what he thinks and give you really
good feedback. You always know where
he stands on a subject.”
In addition to working closely together, Brehm and O’Brien have gotten
to be good friends outside the workplace. Between trips to water parks with
the Brehm family, after-work drinks and
hours bonding over pinball, O’Brien has
developed an appreciation of Brehm’s
well-rounded approach.
“He’s just a really cool dude who happens to be in a wheelchair,” says O’Brien.
“He hasn’t let being paralyzed get in the
way of him being a cool person, a great
dad and a successful businessman.”
with many of the physical needs of their
kids brought out Brehm’s insecurities and
frustration. “My wife’s on her own completely. She’s a stay-at-home mom, and
she’s got her hands full with our two kids
plus having to take care of me at the house
and doing all the work at the house that I
can’t do as the partner on the team, right?”
he says. “So it’s kind of like — I mean, unfortunately my wife has the burden of being a single parent of two kids and a kid
with a disability, right?”
He says he tries to avoid the anger and
provide what he can. “I try to be helpful,
like I can still be like a machine that generates as much money as I can for all the stuff
we’re trying to do,” he says. “So that’s one
of the things I do is I work really hard and
I’m always trying different angles to make
money. I am a financial contributor, which
is OK. And, I can support my wife to be
helpful there, so that’s check number two.”
The mutual support the two provide
for each other, coupled with the support —
both physical and emotional — of friends
and family, has been invaluable to Brehm’s
success. “Whether it’s my wife, or whether
it be a family member, you need to have that
person there for logistics and everything
else,” he says. “That’s the trick. I don’t think
anybody with a spinal cord injury — maybe a small handful — is wealthy enough
that you can buy all the support you need
to do all this stuff without any kind of help,
whether it’s a wife or family member doing
it. You just can’t afford — I couldn’t afford
— to orchestrate all this without her.”
In 2008, Brehm started and ran a website called Ability Trip that provided accessibility information for travelers. He
also started and runs Pinball Armor, a
manufacturer of custom covers for pinball machines. Additionally, Brehm donates his time as a peer ambassador at the
Rehabilitation Institute of Chicago, and
he joined the United Spinal Association
board of directors in March 2014.
That’s more than enough to keep anyone busy, so it’s easy to understand why
right now Brehm says he is “kind of chilling out.”
“I imagine having two kids at age 4 is
a pretty good sized project for a while,” he
says.
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Martial Arts for Wheelers
B Y
L
L I N D A
ike many kids his age, Paul Brailer wanted to
be like Bruce Lee when he grew up — a badass
who could kick, punch and fight his way out
of any situation. But for Bralier, a wheelchair
user born with spina bifida, the only kicking and flying
through the air he was likely to do was in his dreams.
It wasn’t until he was already in his 30s that a chance
meeting with Heidi Rudibaugh, an instructor at The Art
of Karate in Barberton, Ohio, changed his life. She invited him to come and try a class; today, he has a black belt
in taekwondo and his own nonprofit, Criptaedo, which
he created to teach people with disabilities self-defense.
Brailer, now 42, credits his study of taekwondo with
improved fitness, self-esteem, and better public speaking and problem solving skills. “Studying martial arts
M A S T A N D R E A
“As a wheelchair user, it is likely that
in an intense physical conflict, I’d be
knocked out of my chair, so I wanted
to learn methods to deal with that.”
— Erik Kondo
JUNE 2015
23
Developed by Zibin Guo, Ph.D., this wheelchair tai chi program consists
of 13 movements instead of the traditional 26.
helps people with disabilities learn they’re more capable than
they think they are.”
And while karate and taekwondo have been very popular
martial arts for wheelchair users, virtually any one of them can
be adapted with a willing instructor and some creative problem
solving. Today, you’ll find wheelers participating at all ends of
the spectrum — from the meditative flow of tai chi to the fullon contact of mixed martial arts and everything in between.
The reasons for getting involved are equally varied. Some
enjoy the fighting. Some want fitness and a good workout. And
still others want to learn techniques they can use to defend
24
NEW MOBILITY
themselves and keep safe.
Martial arts aren’t just for the boys, either. Just ask Michelle
Colvard or Kelly Schultz.
Colvard, Miss Wheelchair America 2009, was born with spina bifida. She learned about martial arts in high school through
a program on chung moo do, which encompasses a mix of eight
different martial arts, including taekwondo, tai chi, aikido, karate, judo, jujitsu and weapons training.
She liked learning how she could defend herself. “My instructor figured out how I could use my wheelchair to my benefit if someone attacked me and even taught me what to do if I
got pulled from my chair. It made me feel powerful!”
In addition to the physical benefits and stress release the
training gave her, Colvard says her lung power greatly improved.
“After all the breathing exercises we did, I could hold my breath
for several minutes!”
Later on, she and her husband signed up for taekwondo
lessons together. “One thing that really drew me to American
Taekwondo Association,” she says, “was that they have a welldeveloped curriculum for a wheelchair user that is easily incorporated into a regular classroom, so my husband and I could
exercise together. Having something we could do together was
really important to me.”
Like Colvard, Kelly Schultz of Crystal Lake, Ill., was also
born with spina bifida. She took up martial arts as a young
girl and started practicing shotokan karate at the age of 11 after watching her older brother compete. Though she started in
the special recreation class, she quickly progressed to the main-
stream class and found her passion. Today, after nine years of
consistent training, Schultz holds a first degree brown belt; and,
in addition to her own training, she helps teach other young
people — with and without disabilities.
Jim and Marianne O’Hara are the husband and wife team
behind Focus Martial Arts where Schultz trains. Jim is a fifth
degree black belt with 35 years of experience. Marianne is a second degree black belt and special ed teacher. They got involved
in teaching students with disabilities through a chance meeting
with someone at the Northern Illinois Special Recreation Association many years ago, and have incorporated students with
disabilities into their program ever since.
Jim sits in a chair himself to figure out how to adapt the
moves for Schultz. “For example, she can’t kick, so when she does
her forms, we change the move to accommodate knee strikes or
techniques to throw her opponent off balance.” Together they
figure out ways she can use the chair in an attack or competition.
Says Marianne, “She’s stronger mentally, physically and spiritually as a result of her training. This change carries over into
everything she does, from competition to work and social life.”
VARIED BENEFITS OF MARTIAL ARTS
Martial arts doesn’t just benefit kids, either. Marty Katz, 67, is a
polio survivor from the age of 2. Like Brailer, she was inspired
by Bruce Lee movies. But it wasn’t until she was long into adulthood that she found a class for students with disabilities at Family Karate in San Diego. “So at age 44, I walked into the studio
and started my journey.”
Originally Kelly Schultz, who has spina bifida, practiced martial arts in the
special recreation league. But it wasn’t long before she progressed to the
mainstream classes, and she currently holds a first degree brown belt.
Martial arts have helped Katz see the leg brace that enables
her to walk as an advantage instead of a detriment. Though she
hasn’t had to, “I’m fully confident that I could use my brace as
a weapon.” In fact, she can break as many as three boards with
a single kick.
Now a certified instructor, she has been teaching students
with disabilities for more than 10 years. “Rather than see limitations and teach to that level, I try to challenge and allow the
students to grow beyond any perceived limitations,” she says.
Moving beyond limitations is part of what has inspired Erik
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JUNE 2015
25
Erik Kondo practics judo and jujitsu and holds a third degree black belt in
Small Circle Jujitsu. Concerned with the ability of people with disabilities
to defend themselves, he wrote, “Not Me! Self Defense and Martial Arts
for and by People with SCI.”
Kondo’s martial arts journey. Kondo, a T4-5 para from a 1984
motorcycle accident at age 19, lives with his wife and three children in Lexington, Mass. He is an entrepreneur and founder
of the nonprofit Not-Me! and a principal in Conflict Research
Group International.
Growing up with a Japanese father who practiced martial
arts, Kondo learned both judo and jujitsu. Today, he holds a
third degree black belt in Small Circle Jujitsu, which he was
CELEBRATING THE PAST
PROTECTING THE FUTURE
CELEBRATING THE PAST;
PREPARING FOR THE FUTURE
drawn to for its physicality. “Jujitsu involves close range fighting. As a wheelchair user, it is likely that in an intense physical
conflict, I’d be knocked out of my chair, so I wanted to learn
methods to deal with that.”
Like many wheelers drawn to the martial arts, Kondo has
a keen interest in the self-defense aspects for people with disabilities. His book — Not Me! Self-Defense and the Martial Arts
for and by People with SCI — was written to get the message
out that self-defense isn’t just about being physical. It includes
boundary setting, body language, assertive phrases and physical action. And, he says, these are all skills that martial arts
practice can teach.
Martial arts can bring a lot of benefit to people with disabilities, he says. Joining a community, getting involved, the
spiritual benefits, tradition, goal setting, problem solving. “To
me, it’s the opportunity to explore yourself and what you can
and can’t do.”
It was that exploration of movement, possibility and potential
that led Zibin Guo, Ph.D., to create wheelchair tai chi. Guo, a
professor of medical anthropology at the University of Tennessee
Chattanooga, is a long time practitioner of tai chi, a slow, gentle
and meditative martial art. A few months after he arrived in the
United States from China, he was at the University of Connecticut, teaching martial arts and tai chi part time. He got a call from
a man named Paul, who said he was blind and wanted a private
lesson. Though Guo had never taught anyone who was blind, he
went to Paul’s house to give him the lesson. There, he found the
house in darkness. He asked Paul where the light switch was, to
which Paul replied, “What do you need light for?”
“At that moment, the way I saw things changed. This really
motivated me to understand perceptions and the way we rationalize what we think of as ability and disability,” says Guo.
Guo remembers reading an article that discussed how when
people encounter a wheelchair user, they see the chair, not the
person. “I started thinking in terms of Chinese medicine where
we talk about elements and transforming from one to another,
and wondering how we could transform this perception. And
the idea for wheelchair tai chi came to me.”
Working with the local rehabilitation hospital, he developed a
wheelchair tai chi program consisting of 13 movements instead
of the traditional 26. “What is really important is the wheelchair
is integral to the movement, kind of like ice skating,” says Guo.
He took his idea to the Chinese Federation of Disabled People
and the Beijing Paralympic Committee in 2005. They liked it so
much, wheelchair tai chi was featured prior to the opening of
the 2008 Paralympic Games. Today it is part of a Chinese public
health initiative, practiced in every province in the country.
GROWING IN POPULARITY
WWW.NCART.US
26
NEW MOBILITY
Another visionary in the world of martial arts for people with
disabilities is Brett Wolf, founder of Brett Wolf Judo. Though
Wolf has been teaching judo for a long time, it is only in the
last six years that he has added students with disabilities into
his program. Through World Sport Chicago, the legacy organization of Chicago’s bid for the 2016 Olympic and Paralympic
Games, Wolf began teaching judo to children with disabilities
in Chicago Public Schools. “We have students of all kinds. Some
use wheelchairs, some don’t. What we want is for them to be
to
o
to
ut
t
ut
et
et
o
hts
s
ts
k”
k”
e,
de
e,
e
de
and
nd
and
in
n
in
m
m
de
e
de
d
d
kids and to be judo players — that’s our number one creed.”
Though the Menomonee Club, which houses Wolf’s judo
program, received a designation as a National Paralympic Judo
Training Site for athletes with visual disabilities, he remains
committed to creating a fully inclusive environment at the dojo.
He admits to some challenges, though. “For the visually impaired students, there’s a coaching curriculum and certification
that USA Judo put together because it’s a Paralympic sport. For
other students with disabilities, no one gave us any guidance,
we had to learn on the fly.”
In spite of the challenges, Wolf says, “If an instructor is considering whether or not to add students with disabilities into
their programs, do it. If you don’t give someone a chance, you’re
the one who’s missing out.” In fact, he adds, “We have the most
diverse group of students in the dojo I’ve ever seen, and this has
improved every aspect of our program.”
Wolf recognizes the strong community partnerships that
have been integral to their success. “We are working with a lot
of great organizations to provide these kids opportunities —
Chicago Public Schools, Chicago Park District, World Sport
Chicago, Rehab Institute of Chicago, Variety of Illinois — these
organizations have such a history with the disability community. We couldn’t do it without them.”
While judo for blind athletes has been the only martial art
on the Paralympic program until now, that is about to change.
Para-taekwondo has been added to the list of sports that will
be included at the Tokyo 2020 Paralympic Games for athletes
across a wide range of disability categories.
So whether you want to participate at a local dojo or take
your skill all the way to the world stage, martial arts offers
something for everyone. If you’re still not convinced you
should give martial arts a try, Colvard says, “It’s OK to shop
around a bit until you find the studio that makes you feel most
comfortable. If you don’t get a good vibe from an instructor,
just go elsewhere.”
Kondo agrees. “Researching schools and talking to instructors is the best way to find out what works for you. The attitude
of the instructor has a huge impact on the student’s experience.”
Katz, on the other hand, offers this practical, sage advice:
“Stop thinking about it and just do it!”
FOR MORE INFORMATION:
• Criptaedo, 330/612-3215; [email protected],
www.criptaedo.com
• Family Karate, 858/484-4747; athompson@familykaratepq.
com, www.familykaratepq.com
• Brett Wolf Judo, 773/230-6070; [email protected],
www.brettwolfjudo.com
• Not-Me!, 781/643-1499; www.not-me.org
• Focus Martial Arts & Fitness, 847-458-0938; Contact
[email protected], www.focusma.com
• Para-taekwondo, World Taekwando Federation; www.
worldtaekwondofederation.net/para-taekwondo
• Adaptive Martial Arts Association, 802/747-8184; Contact@
adaptivemartialarts.org, www.adaptivemartialarts.org
• Dancing in the chair — Dr. Zibin Guo’s Wheelchair Tai Chi
Chuan; www.youtube.com/watch?v=jR0DbXlS4GI
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THE
CRISIS IN
HOME CARE:
B Y
J O S I E
B Y Z E K
WILL PERSONAL ASSISTANCE DISAPPEAR?
T
wo disability rights powerhouses, ADAPT and
the American Association of People with Disabilities, now find themselves on opposite sides
of a divisive dilemma about how personal assistance is managed and funded throughout the United
States. They are squaring off over the Department of
Labor’s recently adopted “Home Care Rule,” which says
all personal assistants must be paid minimum wage and
time-and-a-half for overtime.
ADAPT claims that, at least right now, no good can
come of this rule because it might rob dollars from existing programs and cause loss of attendant care hours
for those most in need of personal care. AAPD says implementation of the rule may not be easy, but if we can’t
create a more stable workforce — and overtime is key to
that — a lack of attendants could force more people who
need help into nursing homes.
In February, AAPD filed an amicus brief supporting DOL, putting it squarely opposite ADAPT’s position. Not a comfortable place to be, but AAPD says it
received sufficient assurances from the government that
workers can be fairly compensated without consumer
hours being cut.
It all came to a head on March 11, the date of AAPD’s
annual gala. Held in the heart of the Washington, D.C.,
beltway, the organization’s signature event is where advocates, corporate sponsors and elected officials gather
every year to rub elbows, celebrate the recipient of the
Paul G. Hearne Leadership Award and the year’s legislative victories. Platinum sponsors include corporations
such as American Airlines, JP Morgan Chase and newcomer Uber.
At a meeting held earlier that day, mere hours before
the gala, AAPD promised ADAPT and the National
Council on Independent Living it would withdraw its
brief in support of the DOL rule, but then refunded the
tickets of all known ADAPT activists who planned to attend the ball. Furious, activists demanded to know why.
Turns out, that brief hadn’t been withdrawn after all.
As board members became aware of the mishandling of the conflict with ADAPT, AAPD was thrown
into turmoil. The executive director of AAPD, Mark
Perriello, was either fired or encouraged to resign, along
28
NEW MOBILITY
Photo by Chris Van Loan II - Golden Arm Media
Will a Department of Labor rule requiring
overtime for personal assistants help stabilize
the workforce? Or will it destroy our existing
attendant care programs?
In Texas, personal assistants and Texas ADAPT activists are marching together to try to get the pay
of attendants raised from $7.86 to $10 an hour. Nationally, personal assistants are paid an average
of $9.57, rarely receive health care benefits and are not eligible for overtime pay.
WHO ARE OUR WORKERS?
As of 2011, the average personal care assistant in the United States is a woman (87 percent).
Although whites make up the largest bloc (47 percent), it’s more likely she is either black (30
percent), Hispanic (16 percent) or “other” (7 percent). There is a 23 percent chance she wasn’t
born in the United States.
She probably works full time (53 percent), and her average income is $14,000, although
that amount takes part-time salaries into consideration. She earns $9.57 an hour, and is between 44 and 48 years old. Most likely she’s only been to high school (54 percent) and there’s
a good chance she receives public benefits such as food stamps (49 percent).
The demand for her services was expected to rise by 71 percent between 2010 and 2020.
So far that growth is on track.
These stats are from the Paraprofessional Healthcare Institute (phinational.org).
Photo by Jason Minick/Minick Photography
JUNE 2015
29
with Henry Claypool, who was vice president of policy. A number of board members resigned as well.
Like most dilemmas involving the
government, this one is all about funding. Currently most home care programs,
funded through a mix of state and federal dollars, can’t afford to pay overtime.
The federal money flows from Congress
through CMS, which signals it is willing
to approve higher rates for overtime, but
would all the states follow suit? Or, would
people with disabilities in some states have
their hours cut so personal care agencies
can afford to comply with the rule, should
it survive current court challenges?
As complex as the dilemma is, it isn’t
just about policies and rulemaking. It’s
about the real lives of real people whose
independence depends upon personal
assistance.
INTERDEPENDENCE OF
ATTENDANT CARE
RELATIONSHIPS
Meet Theo Braddy, 54, a C4-5 quad who
lives with his wife and children in Harrisburg, Pa. Injured in high school, Braddy
first started using personal assistance while
an undergrad at Edinboro University. He’s
also executive director of the Center for Independent Living of Central Pennsylvania,
which runs a personal assistance program
called Home Care for Living Well.
Before we can begin to understand the
“Keep in mind you
spend some of the most
... intimate isn’t the
right word. You spend
time together doing the
most personal things.”
impact of the Home Care Rule, says Braddy, we’ve got to understand the mutual
dependency of the consumer-personal
assistant relationship. It’s not the typical
manager-worker scenario.
“Keep in mind you spend some of the
most ... intimate isn’t the right word. You
spend time together doing the most per-
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sonal things, so how can you not develop
a friendship? It becomes very difficult
when that relationship crosses the line
and the attendant wants to treat you as a
friend instead of boss,” he says.
The problem is, many personal assistants are impoverished, and this affects
their ability to do their job. [See sidebar:
Who Are Our Workers?] But if they can’t
do their job, people who depend on them,
like Braddy, may not get out of bed that day.
“Here’s a typical situation,” says Braddy. “You don’t drive, and you need something and the attendant doesn’t have
money. They also need gas money and
you know if they don’t get it you aren’t
going to get up that morning. What are
you going to do? You’re going to give
them that money. And when you do that,
you’ve crossed the line. A lot of times the
attendant leaves, owing you money, and
there’s nothing you can do about it. That’s
happened to me.”
On the other side, Braddy’s primary
attendant for the past nine years, Brittany
Hall, says it’s difficult to survive on what
personal assistance programs pay.
Hall, 27, recently became the program
Photo by Jason Minick/Minick Photography
director for CILCP’s attendant care program. The job provides much better economic security than the personal assistant’s salary she used to live on. She’s also
the one who gets Braddy up in the morning, since he couldn’t find anyone else he
could depend upon. The income from
her new job, plus the hours she works for
Braddy, has dramatically improved her
quality of life.
“I just moved out of the ‘hood’ last
month,” says Hall. “There were a lot of
drug dealers, a lot of drama. It was nerve
wracking. I didn’t get home until it was
dark. I’d leave in the morning before it
was light, take my kid to daycare, and
you never knew what would happen in
that neighborhood. A lot of my neighbors
have had their cars and houses broken
into. I pretty much went in the house,
came out, got in the car, never took my
daughter outside.”
That’s not living. Why did she remain an
attendant for so long? Hall says it’s her chosen vocation. “For a lot of people it might be
a paycheck, but how can you not get connected to the people you serve? As a CNA
they teach you don’t get involved. But Theo’s
Everyone says disabled employers and personal assistants shouldn’t become friends, but that’s a
tough line to navigate. The nature of the work is very personal, and there is an interdependency
based in hardship — pretty much a recipe for friendship. “For a lot of people it might be a paycheck,
but how can you not get connected to the people you serve?” asks Brittany Hall, pictured with her
employer, Theo Braddy.
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Photo by Loren Worthington/Arizona Bridge to Independent Living
the pay. But like Hall, those who do are often quite dedicated. So why not pay them
more so they can afford to keep working
in people’s homes? And why on earth is
it so controversial to pay them overtime?
It comes down to the rate agencies receive from their states to provide personal
assistance.
NO STATE IS LIKE ANY OTHER
Many centers for independent living train people with disabilities how to manage their attendants.
This fosters “consumer control,” which is the lynchpin of existing personal assistance programs.
Many fear consumer control is at risk if the funding structure changes.
been in my life longer than any other man.”
She went back to help Braddy when
his morning attendant fell through, even
though she now has a better paying job
— that Braddy’s mentoring helped her
obtain. “He needed me so I came back,”
32
NEW MOBILITY
she says. “And as hectic as it is to get up at
4:30 a.m., get my daughter to daycare, get
Theo up, go home, get me up for work …
it’s exhausting … but how can I say no?”
Not many good personal assistants
stay in the field long, given the hours and
Braddy’s CIL receives roughly $18 an hour
from the state of Pennsylvania to provide
personal assistance. The attendant earns
between $10.75 to $11.50 of that, depending
on variables such as job performance. Taxes, Social Security, workers comp and allowing attendants some vacation days take
about $4. That leaves around $3.75, about
$1 of which goes toward the in-office staff
who administrate the program. The rest
goes to rent and things like TB tests and
clearances. In the end the CIL clears about
$2. But the program would need much
more than $2 an hour to pay for time-anda-half on a wage of $10.75 an hour.
In Texas, consumers and attendants
march side-by-side trying to budge the
pay for personal assistants up to $10 from
DOL HOME CARE RULE TIMELINE:
First promulgated in 2013, the Home Care Rule immediately faced court challenges.
Currently it is supported by one powerful disability group and opposed by another.
SEPT. 17, 2013:
DEC. 22, 2014:
The Department of Labor announces home care workers will be protected by the Fair
Labor Standards Act starting Jan. 1, 2015, which means they are to be paid minimum wage
and overtime. The Home Care Association of America and other plaintiffs file a lawsuit
against the “Home Care Final Rule,” preventing it from taking effect.
The U.S. District Court for the District of Columbia, ruling in Home Care Association of
America v. Weil, strikes down DOL’s rule requiring overtime for personal care attendants
hired through third-parties such as personal care agencies. National ADAPT and the
National Council on Independent Living supply affidavits of likely harm in support of the
Home Care Association’s lawsuit.
The Department of Labor appeals this decision along with a second decision striking down
companionship rules.
FEB. 27, 2015:
The American Association of People with Disabilities files an amicus brief in support of the
DOL’s appeal. This puts AAPD at odds with ADAPT and NCIL.
APRIL 6, 2015:
ADAPT and NCIL submit their own amicus brief in support of the Home Care Association.
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“Home care should be
a career choice and not
employment of last
resort, as it has been for
generations. Fair pay is
essential to this process.”
$7.86 an hour. The community has produced a YouTube video on the issue and
in it, Dolores Carrillo shares how she can
only afford to be an attendant because she
receives food stamps. “They need to improve on the pay because I can’t pay my
bills,” said Carrillo in the video. “If I were
to choose to work in an institution I could
start at almost $10.”
Arizona Bridge to Independent Living
is doing everything it can to better compensate personal assistants, typically be-
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tween $9.50 to $11.50 an hour, depending
on the level of care a person needs. Plus,
new this year, ABIL also provides basic
health insurance. How are they doing it?
“Well the jury’s still out, because we just
started providing health care in January,”
says Gwen Dean, vice president of personal assistance services for ABIL. “We’re
not sure what it will end up costing us yet,
but it’s a bunch. We have restructured our
administrative staff, we’ve not hired staff
that we could have — or that we needed
to, frankly. We’ve cut back on everything
we could possibly cut back on.”
Between recession-era cuts and looming expectations to provide health insurance for all full-time employees, including attendants, as required by the
Affordable Care Act, ABIL is maxed out.
So an overtime policy? Not possible.
Most of ABIL’s consumers get about
20 hours a week, and often the attendants
are family members. Not many people,
including quads, get much more than 40
hours, but they’re the ones who’d be affected by the new rule. “If you have 43 or
45 hours, something like that, you’d have
to send somebody else in for the additional hours,” says Dean, who doesn’t see
how her agency would be able to pay for
overtime.
Pennsylvania, Texas and Arizona are
very different states. Yet they are representative of most around the nation who
are adamant that if they are forced to pay
attendants overtime, both consumers and
attendants will be hurt.
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Right now, there’s a court injunction on
the DOL’s Home Care Rule — the result
of the lawsuit ADAPT and AAPD are at
odds about. But if Braddy’s CIL is forced
to pay time-and-a-half at the current rate,
overtime hours would not be affordable
and could not be approved. Right now
many full-time attendants make ends
meet by working more than 40 hours a
week. With the rule in effect, if a person
with a disability uses, say, 45 hours of
services a week, rather than pay overtime
he would have to hire an additional attendant for that extra five hours. But not
many attendants will be interested in a
job that’s only five hours a week.
Budget-conscious critics might ask
why that disabled person cannot get by on
40 hours of care a week instead of 45. Perhaps they are not aware that this seemingly modest cut in hours might mean
one less bath or meal a day. These are the
types of choices many fear will be made if
overtime becomes mandated.
Early on there was a community-wide
panic attack when the Department of Justice seemed to suggest it would be OK to
allow the hours of program participants
to be cut in order to pay for overtime. But
now the DOJ has put in writing that cutting hours of care in order to pay workers
more is not OK, and probably not legal.
CMS quietly whispers to advocates
and agencies that it will approve higher
rates to allow for overtime. And officials
in some states — off-the-record — say all
they have to do is “throw a switch” and
the overtime rate will happen. But if this
is true, why are the bureaucrats so tightlipped about it? Why not put it in writing? Why won’t CMS and state officials
stand up and say it out loud?
AAPD BOARD MEMBER
SPEAKS OUT
AAPD board member and United Spinal general counsel Jim Weisman sent an
email to the National Disability Leader-
ship Alliance venting his frustrations with
how this whole controversy has unfolded.
Like most AAPD board members, he was
unaware AAPD had even submitted an
amicus brief supporting the DOL’s Home
Care Rule. “In fact, when ADAPT won in
the lower court I sent [national ADAPT
organizer] Bruce Darling a congratulatory
email. Had this been brought to the board,
I would never have supported appealing a
victory by a disability group. AAPD should
not oppose people with disabilities at-
tempting to protect themselves and others
with disabilities from harm.”
Yet even so, Weisman supports the
rule and wants it to be implemented.
To explain why, he shared a story about
how, in the ’70s, he and fellow legal services lawyer Paul Hearne, who founded
AAPD, were approached by a mother
whose son was being bullied in school
because he was deaf. “We told her that
her son should be mainstreamed — that
we would get the school to protect him.
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The hours of consumers like John Holder may
be in jeopardy if the Center for Independent
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JUNE 2015
35
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Since then, United Spinal Association has continued to advocate on the front lines to
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36
NEW MOBILITY
In September 2013, in conjunction with the Department of
Justice and Centers for Medicare and Medicaid Services, the
Department of Labor announced all home care workers must
receive at least minimum wage and overtime starting in 2015.
The Home Care Association of America sued to keep the rule
from being implemented, and ADAPT and the National Council
on Independent Living submitted affidavits supporting the
Home Care Association. In December 2014, a federal court ruled
for the Home Care Association. The DOL appealed, and at press
time there had not yet been a final ruling.
Then, on Feb. 27, AAPD filed an amicus brief without the
knowledge of many of its board members, asserting attendants
ought to be paid overtime — the main point of contention. The
document was written by Sam Bagenstos, a longtime supporter
of disability rights and professor of law at the University of Michigan. Previously he was the principal deputy assistant attorney
general at the DOJ, and his career as a civil rights lawyer has
focused on disability rights.
The brief’s major point is that low wages and turnover are
the most significant barriers for people with disabilities seeking
access to personal assistance services. Since the Home Care Rule
addresses this by saying workers must receive minimum wage
and overtime, the brief argues the Rule is a good thing that will
bolster and support attendant care workers, without whom
the whole our-homes-not-nursing-home house of cards falls.
Therefore, states must implement the Home Care Rule in a way
that promotes the required integration of the Americans with
Disabilities Act.
So what part of this does ADAPT disagree with?
“The conclusion,” says Bruce Darling, a national ADAPT
organizer and executive director of the Center for Disability
Rights, located in Rochester, N.Y. That conclusion is one line long:
“The judgment of the district court should be reversed,” which
would mean the implementation of the Home Care Rule would
go forward. “We don’t disagree that increasing wages makes
things better. We see the relationship between people who use
attendant care and attendants as being symbiotic,” he says. But
ADAPT believes providing overtime pay to attendants will cause
more harm than good.
Fellow ADAPT organizer Cathy Cranston, from Austin, Texas,
echoes Darling’s sentiments about the relationship between
consumer and the attendant. She has worked as a personal
assistant and her husband has a disability, so she says she sees
She left unhappy and unsatisfied. We
knew we were exposing her child to possible harm — but we did it anyway, in the
name of mainstreaming. Essentially, her
child was grist for the civil rights mill.
We were serving a higher purpose, we assured ourselves.”
Demanding that attendants be paid
fairly mirrors the fight for sheltered workshop employees to be paid minimum
Photo by Chris Van Loan II - Golden Arm Media
HOW THE MESS BEGAN
Although Cathy Cranston (right) fights for higher wages, she believes
the Home Care Rule will make it harder for people with disabilities to
keep their attendants.
both sides. “We are extensions of consumers,” she says. “Some
attendants want to fix or save the person or make their life
better, but that’s not the job. We’re there for the person we’re
serving, that’s our purpose. It’s a sacred relationship.”
Darling shares how his friend and fellow ADAPT activist,
Debby, is afraid her attendant, Keisha, will not be allowed to
work the overtime hours that keep her finances afloat if her
agency is forced to pay time and a half. Keisha, in turn, worries
Debby’s hours might be cut on her behalf, and then Debby
wouldn’t be able to keep her independence. “And this is who
we are fundamentally as a community,” says Darling. “The first
thing the consumer thinks about is the attendant, and viceversa. I share this because I think some of the difficulty we’ve
had is that people are applying the worker-manager model to
what we’re saying, and that’s not what we’re doing at all. We
are acknowledging that when you move one piece without the
other, bad things happen.”
But if CMS approves higher rates to allow overtime pay, surely
the states will come through and fund their share, won’t they?
New York did, when overtime went into effect, right before the
injunction. “But that was $5 million for six months, and that’s
enough money to maybe get our state through three months.
When the new budget came out, there was no provision from
the state to pay for overtime,” says Darling.
wage, according to Weisman. “Disability
advocates have pushed to eliminate the
exemption from the Fair Labor Standards
Act for people with disabilities involved
in sheltered work that permits these disabled workers to be paid less than the
minimum wage,” he says. “When advocates, including me, are told if wages in
sheltered work are raised there will be
fewer jobs for those people with disabili-
ties that need sheltered work placement,
we push ahead anyway.”
He cited these examples to explain
why even though AAPD probably should
not have submitted that brief in the first
place, it would be a greater wrong to withdraw it.
“Home care must come into the 21st
century. Workers must be paid fairly.
Home care workers are vital to commuJUNE 2015
37
CHICAGO: UNIONS CAN HELP
In Chicago, the disability community decided to embrace the unions. Why? Because they were failing at getting their aides raises.
“When I first came to Illinois, the rate was so low I couldn’t hire sustainable personal assistants,” says Rahnee Patrick, director of independent living at Access Living. She’s also a Chicago ADAPT organizer and uses personal assistants. “Chicago
ADAPT took up getting raises one year, as did the workers union SEIU. We couldn’t
get it through, but once SEIU became the collective bargainer, we’ve seen an
increase and I’ve been able to keep
my assistants for longer stretches. I
get better services because I get a
consistent, sustainable base.”
Personal assistants can start at $13
an hour in Chicago, and for a little
while anyway, overtime pay was not
a problem. Overtime was instituted
by Illinois in preparation for the Home
Care Rule, which was to take effect
Jan. 1, 2015. “But then the rules were
vacated and National ADAPT supported them being vacated,” says Patrick.
Patrick is angry at National ADAPT
Rahnee Patrick is able to work full time because
of the attendants who help to get her ready in the
for not doing more to support workers
morning. She says it’s easier to find good attenand for demonstrating against SEIU,
dants when they are paid fairly.
the union many of Chicago’s personal
assistants belong to. “We boycotted a national action over this. With SEIU here in Illinois, we obviously were able to get overtime for our personal assistants, and they are
pissed the overtime rule has been vacated.” Without a rule saying it must, not even
progressive Illinois will fund overtime pay.
nity involvement and integration for
some people with disabilities. Home
care should be a career choice and not
employment of last resort, as it has
been for generations. Fair pay is essential to this process.”
Some advocates feel our community
ought to be pushing harder for specific
written assurances that rates will be adjusted and consumer’s hours will not be
reduced. AAPD already has received an
assurance directly from DOL Secretary
Thomas Perez: “In the Department’s
outreach efforts since promulgation of
the rule, we have consistently emphasized the importance of upholding the
twin principles of protecting the rights
of workers and supporting the individuals who rely on home care services by not
interfering with the models of care that
allow them to stay in their homes and
communities.”
To those who quietly support the
Home Care Rule, Weisman has a message: “I have heard from many of you in
the disabled community that you agree
achieving fair pay for workers is essential
if we are to develop home care capacity
for people with disabilities who are living longer than ever before and want to
remain in the community, and for aging
baby boomers. Not one of you has spoken up publicly.”
WHAT HAPPENS NOW?
In Chicago, disability advocates and SEIU members work together. Here, Gilda Brown, a union
member, is being arrested for protesting against cuts to home care services.
38
8
3
NEEW
W M
MO
OBBI ILLI ITTYY
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There is consensus that personal assistants ought to be better compensated.
No one wants to deny them overtime
pay, benefits or any of the other perks
most other American workers have, but
the devil, as they say, is in the details.
And the details are what ADAPT sees as
the problem.
Is ADAPT correct that, right now,
paying personal assistants overtime
will cause many people to have their
hours cut, and possibly even be forced
back into institutions? Or is AAPD on
the right track in stating unequivocally, although initially quite clumsily,
that the time has finally come to force
the issue of better compensation for
personal care workers?
So much is at stake — not only the
livelihoods of personal assistants and the
families that depend on them, but also
the freedom and independence of people
with disabilities who rely upon personal
assistance in every state in our union.
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SPOTLIGHT: PITTSBURGH
MY TAKE
Many people know Pittsburgh for its
professional sports teams, but most
aren’t aware of its exploding adaptive
sports scene. Whether you want to be on
a nationally ranked, competitive team,
train for the Paralympics, or just enjoy
leisure time, we have something to offer. One of the unique aspects of our city
is that it is centered around
three rivers, which provide no
shortage of opportunities for
outdoor activities.
With the recent completion of the Greater Allegheny
Passage, a 150-mile multi-use
trail connecting Pittsburgh
to Washington, D.C., we now have a
burgeoning handcyling community.
Whether training for a marathon with
Achilles International or the Pittsburgh
Steelwheelers or taking a meandering stroll with Three Rivers Adaptive
Sports, there is no shortage of handcycles to ride in this town. We also have
great water sports. Three Rivers Row-
PLACES TO GO
Pittsburgh is a gastronomic goldmine.
It seems like there is a new restaurant
popping up every day. I can’t talk about
food without mentioning Primanti
Brother’s — a sandwich shop dishing
out traditional deli sandwiches, piled
high with French fries and coleslaw. The
original shop is accessible, but a bit tight
if packed. Some of the newer shops are
much more spacious.
There are plenty of performing arts
venues in the area, too, but the Byham
Theater has excellent sound quality
and accessible seating — a group of
private boxes lining the back of the
theater. One drawback is the steep incline of the ramp inside the doors, but
it’s worth the effort.
We have great museums as well. The
natural history museum, recently renovated, has one of the largest collections
of dinosaur bones in the world. We now
have a set of tyrannosaurs and diplodocuses, among many other prehistoric
creatures. The natural history museum
BY BRYAN MCCORMICK
SKINNY ON THE CITY
Pittsburgh is a blossoming city with opportunities and activities for people of all
abilities. It’s no longer “hell with the lid off,” as it was called during the peak of the
steel industry. Today, Pittsburgh is a clean city built on technology, education and
health care. With a number of parks, river trails, restaurants, and museums, there
is always something to do.
ing Association was ranked the best
rowing club three times by U.S. Rowing, and it is also a Paralympic training center. If competitive rowing isn’t
is connected to the museum of art —
with legendary greats like Monet and
Picasso. Both museums are fully accessible and have a parking lot as well as a
covered garage.
MUST SEE, MUST DO
RESTAURANT: My personal favorite
is Butcher and the Rye. It has over
300 bottles of whiskey and a unique
menu, with everything from pig
candy to roasted Brussels sprouts.
RIVER TRAILS: These paved, relatively flat, and picturesque trails are
a great way to navigate and see the
city. You can even bike all the way to
Washington, D.C.
CATHEDRAL OF LEARNING: The
third tallest educational building in
the world has vaulted ceilings and internationally themed rooms — quite
beautiful to behold.
Learn
about the
Pittsburgh
Chapter on
next page
your thing, Dynamic Paddlers and Three Rivers Adaptive Sports can take you out
for a leisurely float on the rivers.
GETTING AROUND
If you don’t live in the city limits, getting around via public transportation
can be a bit tricky because of limited
bus routes and light rail. Our network
of bridges and tunnels can gum up traffic in two shakes of a lamb’s tail, so if
you have a personal vehicle, you need
to be prepared when navigating the
city. We do have a great rail system
called the “T”, which runs from our
South Hills region to the downtown
business district. From there, it travels under the Allegheny River to the
North Shore, where our two stadiums
are located. And if you take the T from
downtown to the North Shore, it’s free.
Some T stations have steep ramps and
can be difficult to access, but there are
elevators at each station downtown. We
also have an express busway that runs
from the business district to Oakland,
the university and hospital hub. Many
stops are covered, and all our buses are
wheelchair accessible.
JUNE 2015
41
Chapter Check-In
Pittsburgh Chapter: Good, Clean Fun
When the sun comes out and the snow has
all melted away, Pittsburgh wheelchair
users know it must almost be time for the
annual Wheelchair Wash & Tune-Up.
What began five years ago as an offshoot
of a peer mentoring group, with five to 10
people attending, has grown into one of the
centerpiece events of the Pittsburgh chapter of United Spinal. This year’s event is
scheduled for June 4 at UPMC Mercy and
promises to be the best yet.
“The wheelchair wash and tune-up is a
place where people can come and get their
chairs washed and you can also get a consultation with a wheelchair provider to see
if there’s anything that needs to be fixed
right now – simple things like tightening up
brakes and bolts and casters and things along
those lines – and if they can’t do a quick fix
on site, they can let you know what’s going
on, what it would take to repair and if they
can repair it or if they can just relay that information to their wheelchair provider,” says
Bryan McCormick, the chapter president.
Over the years the event has evolved into
more than just a service day, with live music,
food and special speakers and guests. “Last
year we had an archer, the year before we
had an Indy car driver,” says McCormick.
“It’s all about getting everybody together
and having some fun. The more people that
come to the wash, the more people that learn
about our organization and what we do and
so it’s just helping us move forward.”
The chapter has been doing just that since
affiliating with United Spinal two years ago.
“Being affiliated has definitely helped us
improve upon some of the things that we’re
doing by having a little bit of funding available,” he says. McCormick, a para who works
as a vocational rehab counselor, added that
funding would help improve the Wheelchair
Wash and handcycling clinic the chapter
organizes, in addition to other events, like
a recent screening of Endless Abilities. The
movie documents four best friends’ crosscountry odyssey in search of adaptive sports.
The April 12 screening was the first time the
chapter had hosted such an event and also the
local premier of the acclaimed film. “Having an official organization that we can use
to support that and back that and organizes
everything, it definitely helps.”
Wash away that post-winter grime at the Pittsburgh chapter’s Wheelchair Wash & Tune-Up.
42
NEW MOBILITY
42
NEW MOBILITY
Advocacy
Ramping Up for ‘Roll on Capitol Hill’: An Advocacy How-To
S
o you want to be an advocate but have
no idea how to do it. You want to educate
our nation’s decision makers about an
issue that affects your life but don’t know what
to say. The prospect of rolling into an elected
official’s office and being expected to know
the intricacies of what you’re talking about is
freaking you out.
You only need to do two simple things to
be an effective advocate: relax and be yourself.
Whether you are visiting a senator in
Washington, D.C., a representative in your
state capitol or a city or county official, you
are there to get someone to take action that
you believe will help you and others. The best
way to do that is to tell your story. Make them
walk — er, roll — in your shoes/wheels, help
them understand why you need the action you
are asking them to take. Don’t be surprised if
policymakers simply don’t understand or have
never considered the issues and realities you
present to them. That’s why you are there.
Let’s say you are advocating for your
representative to support recognizing complex
rehab technology separately under Medicare.
How do you get them to understand how
important it is to you?
Share your personal story. How
has getting the wrong (or right)
equipment affected you?
• Simply show off your wheels to whoever you are meeting with. Do you have tilt and
recline? Show them how it works and explain
how you benefit (less swelling, decreased
pressure sore risk).
• Try to explain, in simple language, how
your chair meets your needs, or doesn’t. For
example, not having tilt could lead to pressure sores, or a poorly fitted backrest could
cause scoliosis.
• Take it a step further. How does the right
equipment benefit you? Does a lighter-weight
chair cause less wear and tear on your upper
extremities? Do you use a cushion with some
additional features to prevent pressure sores?
Request action. Politely and confidently state what you are asking
for. For CRT, you are asking for
the legislator’s support for the House and
Senate bills.
Quantify the impact. Make your
“ask” make sense in terms of money.
If there is an obvious upfront cost
but a not-so-obvious extended benefit, help
them see it. For example, there are studies
1
that show the cost of medical care for pressure
sores per incident can be upwards of $80,000.
That money could be saved by providing the
right chair and cushion.
Give the big picture. In the long
run, paying more upfront for the right
equipment potentially leads to more
active, healthier users of CRT who can become
employed and pay taxes. So, more up front, but
less in insurance costs, less pressure on Social
Security, Medicare and Medicaid and more
revenue for the good ol’ USA.
Listen. Chances are whoever you are
meeting with won’t sign on or agree to
what you are asking right away. Listen
to what they say: their reservations, information that might sway them, suggestions they
have. Progress takes time and what you learn
could be the key to the next steps forward.
That’s five simple steps. You can use them
for any issue you are advocating for: Medicare,
Medicaid, access issues, research funding — it
4
5
LIVE
YOUR
LIFE
doesn’t matter. And remember — just relax
and be yourself. Whoever you are meeting with is there to meet with you, and your
experience is as valid as anyone’s: You are the
expert on your own life.
If you’re still nervous, remember that you
are talking to elected officials (or their proxies)
who are there to represent you and the other
people in their district. They don’t have to
agree with you or do what you ask, but don’t let
them enjoy the excuse, “I didn’t understand.”
Make them understand and make them take
a stand. Hopefully they will see the light and
support your cause. If they don’t, you have a
reason to vote against them and elect someone
who does support you. However, always be
respectful because even if they may not support you on one issue, they may support you
on something else that you may want to talk
to them about. Also, if they ask you questions
that you don’t know how to answer, you can
always tell them you’ll get back to them with
the appropriate information.
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JUNE 2015
43
Roll on Capitol Hill: MAKING A DIFFERENCE
What have you learned at previous ROCH events and what has
brought you back? What are your
goals for the event?
If this is your first time attending
ROCH, why did you decide to
attend and what are you hoping
to achieve?
Wes Bowden, 57, C2
Nashville, Tennessee
I decided to go to Washington so I can learn
more about the different legislation currently
affecting the SCI community, so I can better
advocate for change. To do this, I need a greater
understanding of the important issues and
topics that are getting addressed at the federal
level. What better way to do this than through
this great event? I am also looking forward to
sharing time with my peers and hearing their
stories of recovery and perseverance while
having a chance to share mine with our government representatives. I hope to help them better
understand our key challenges and daily obstacles and, in turn, help them help us through
better legislation.
Joanne Pearson, 45, CIDP, Lupus, MS
Huntsville, Alabama
I am hoping to gain a better understanding
of how to lobby for change in the disability
community. Also to develop strong
relationships with key people in
order to advocate for better legislation to support important causes in
my community and beyond. I also
want to let my legislators know how serious
HR942/S948 is to all those with disabilities.
Support of this bill will bring wider access to
complex rehab technology and provide a better quality of life for millions of Americans
with disabilities.
44
NEW MOBILITY
Andrew Davis, Spina Bifida
Marietta, Georgia
I want to attend ROCH because I want to make
sure that those of us in the disabled community have access to programs/products we
need to be a part of the community in which
we live! I want to make sure that Congress
understands what life is really about from a
wheelchair user’s point of view before they
vote on an issue important to those of us in
the disabled community.
Holly Marie Petro, 31, T5
Wilkes-Barre, Pennsylvania
I thought it would be a great opportunity to
meet others and help make a difference in the
lives of those with disabilities. Unless you
personally know someone with a disability, or
are that person, you are unaware of the barriers those of us with disabilities face each and
every day. I want to help raise awareness, and
what better way than to meet with those that
help make that change.
Holly
Marie
Petro
Earle C. Powdrell, 60, Brain Stem Stroke
Friendswood, Texas
In my life before the wheelchair, I never
thought of myself as an activist. I would
advocate for the space program but only on a
professional level. I never realized the need,
the satisfaction and the purpose of life that
would come from attending my first ROCH
and being in the training sessions of ROCH
with delegates from across the United States.
At home I had felt alone, at ROCH 2012, I
realized with my wife that I mattered, that
my issues were real, and that I could possibly
be the first person Capitol Hill had ever seen
using a wheelchair that can stand me up with a
voice communicator that responds to my eyes.
That is the power of ROCH.
Erin Gildner, 35, T11-12
Bryant, Arkansas
I made some great connections and
contacts last year and have kept the
conversation going on. I learn so
much about what’s going in other states and
on a national level by keeping up with my new
friends on social media. I just hope I can soak
up new ideas and skills to help improve the
health and well-being of fellow Arkansans
and to make new connections that can help me
become a better leader in the community. José Hernandez, 34, C5
Bronx, New York
Each time I go back to Washington, D.C., I learn
that most politicians don’t really understand
the issues and they are more concerned about
numbers and appearances — and if you can
make your issue sound great with numbers and
personalize it you will get a better result.
Angie Hulsebus, 32, C5-6
Cambridge, Iowa
It’s sometimes difficult to remember that our
government is made up of people — humans
just like you and me. And just like we do not
know what we’re not taught, we cannot expect
them to know what they’re not taught. If our
leaders have never been around any individuals with different abilities, they likely do not
know the issues we face or the challenges in our
everyday lives. Tennessee members
Teal Sherer and Robbin
Sinatra greet U.S. Sen.
Bob Corker (R-Tenn).
What do you think is the biggest
issue facing the spinal cord injury
community?
Walter Delson, 36, T4
Berkeley, California
Technology has great capacity to increase the
quality of life for people living with SCI. I
think that access to this rapidly growing technology is one of the biggest issues facing the
spinal cord injury community. Adaptive equipment will always be expensive, and I think it
is important to advocate for more funding for
research and grants to provide new technologies to many people with SCI that could not
otherwise afford them. Earle C. Powdrell, 60, Brain Stem Stroke
Friendswood, Texas
Access to rehabilitation – do not cut it! My
disability is an Olympic Event. You cannot
train to be a professional athlete in 28 to 40
days, so how can the government expect us to
stay healthy and continue to recover in such a
short amount of time?
Frances Ozur Cole, 56, T12-L1
Albuquerque, New Mexico
Even though we are celebrating the
25th anniversary of the ADA, most
It truly is an amazing experience to be able to be active
in the democratic experience.
Access to policy makers is
easier than I realized. Elected
legislators are there to help
people (more than most people realize) and legislators do
support policies and issues
that are good and sensible.
“
“
— Rob Wudlick, 30, C4
Excelsior, Minnesota
of our home communities still do not understand the difficulties facing the world from
a wheelchair. Accessibility awareness needs
to be brought to the attention of our schools,
churches and state and local leaders. Never
again do I want to be told by anyone, “sorry,
we are grandfathered and do not have to accommodate you.” It is our right to be part of
our neighborhoods and cities. No one has the
right to restrict us to our homes.
Alicia Regan, 38, Transverse Myelitis
Leesville, South Carolina
I think one of the greatest challenges facing
the SCI community is finding the confidence
and passion to “stand up” for ourselves with
dignity and distinction. We either shy away
because of stereotypes, or we swing too far the
other way and become jerks to overcompensate. A disability is as hard emotionally as it
is physically and we must BE the change we
want to see. Once we have the confidence that
we are not broken, we can help fix the broken
things in our lives.
José Hernandez, 34, C5
Bronx, New York
A lot of individuals with disabilities want to return to work;
however, they have no idea how to
navigate the confusing mess that it is to be
able to return to work and keep your medical
benefits. That prevented me from working
a long time. I recently started working and
I am still confused about how the whole
system works and not even sure if I’m going
to be able to keep my Medicaid. Being a C5
quadriplegic I need my medical insurance to
be able to work.
Christopher Salas, 39, C5
San Antonio, Texas
I have learned not to be intimidated
by politicians. They are flesh and
blood just like you and I. I am going
back because the fight is not over. Unless we miraculously create a Utopian
society, there will always be issues
that need correcting.
The biggest issue facing the spinal
cord injury community is government policies that hinder those in the
system who want to help themselves.
People only work part time or don’t
get married because the minute
anyone has a dollar more than the
allotted income, benefits start getting
taken away. Instead of helping and
giving a hand up for those trying to
get out, they punish them.
I want to continue to shed light on
a minority that I don’t see a single
politician really get behind. The ADA
did open up doors for those with
disabilities, but it needs to continue
to evolve with the times just as our
constitution does. Disabled Americans roughly make up 19 percent
of the population, according to the
2010 Census Bureau, but have no true
representation. My other goals are to
help support United Spinal spread the
message of their agenda. I want to be
one of the voices that parts the clouds
of ignorance and shame and shines
the light of beauty and possibility.
JUNE 2015
45
Advocacy
Mission
United Spinal Association’s
mission is to improve the
quality of life of all Americans living with spinal cord
injuries and disorders
(SCI/D). Membership in United Spinal is open to anyone
with an interest in SCI/D.
For more information on
the benefits of joining, visit
www.unitedspinal.org or call
800/404-2898.
SPINAL CORD
RESOURCE CENTER
Questions? We Have Answers!
800/962-9629
www.spinalcord.org/
resource-center
WHEELCHAIR MEDIC
Expert Wheelchair Repair
Fort Totten, NY:
718/352-1623
Castle Point, NY:
845/831-2000, ext. 5394
www.wheelchairmedic.com
VETERANS SERVICE OFFICE
Veterans’ Benefits Advocacy
Philadelphia, PA:
215/381-3037 or 800/807-0190
M-F 8:30 a.m. to 4:30 p.m.
www.vetsfirst.org
CONGRESSIONAL
LIAISON OFFICE
Disability Policy Advocacy
Washington, DC 202/556-2076
46
NEW MOBILITY
ravel easy for individuals with spinal cord disabilities
Why We Fight: The ABLE Act
O
n Dec. 19, 2014, President Barack
Obama signed the Achieving a Better
Life Experience Act of 2014. The
ABLE Act allows people who were disabled
before their 26th birthday to save money
for qualified expenses in tax-exempt ABLE
accounts without losing their Medicaid eligibility and Supplemental Security Income
— a goal disability advocates have fought
for since the legislation was first introduced
in 2006. The president’s signing was the
culmination of more than nine years of hard
work and proof there is a light at the end of
a legislative process that can seem endless.
Since 2006, members of Congress from
both sides of the aisle have been advocating
for improvements to personal savings and
tax-exempt savings accounts by introducing
the ABLE Act. The Act adjusts the Internal
Revenue Code to establish tax-exempt ABLE
Five core beliefs drive United
Spinal’s public policy priorities:
independent living, employment
and self-sufficiency; access to
quality affordable healthcare;
consumer-directed quality
health care and community
integration; preservation of
social security benefits; and,
protection of disability rights.
accounts to allow people with disabilities to
save private funds to pay for qualified disability expenses such as education, housing,
transportation, employment support and other
personal support expenses. An ABLE program
is established and maintained by a state agency
or educational institution and a person makes
contributions to an ABLE account to pay for
those qualified expenses. An ABLE account is
treated the same way as a 529 college savings
account for income tax purposes (i.e., allowing
a tax exemption).
ABLE accounts are available for individuals who receive SSI or disability benefits and
for those who have medically determined
physical or mental impairment with significant
functional limitations. There are 58 million
individuals with disabilities in the United
States, many of whom
may seek to establish
ABLE Accounts.
That the ABLE
Alex
Act passed with record
Bennewith
numbers, with 380 cosponsors on the House
VP of Government
Relations,
bill and 78 co-sponsors
United Spinal
on the companion bill
in the Senate, is testament to the work of legislators and advocates
who continued to fight for what they knew was
needed. Thanks must also go to Rep. Cathy
McMorris Rodgers (R-Wash.), who made an
impassioned speech in support of the passage
of the ABLE Act at a Capitol Hill hearing in
the fall, as well as various key committees.
Rep. McMorris Rodgers was the recipient of
the 2014 Roll on Capitol Hill Junius A. Kellogg Outstanding Congressional Leadership
Award, in part, because of her leadership on
the ABLE Act.
The ABLE Act is important legislation
that can improve the independence and selfsufficiency of many of our members and
the broader disability community. However,
United Spinal is concerned with the version of
the ABLE Act that passed into law with two
provisions that limit who the law can help. The
first provision limits eligibility for an ABLE
account to those who are incapable of engaging in substantial gainful work activity. The
addition of this provision will discourage some
from working to their full extent and runs contrary to the views of the disability community
and the intent of the Workforce Innovation and
Opportunity Act, which was signed into law
last July. The second provision limits eligibility
for an ABLE account to people whose disability occurred before they turned 26. We don’t
understand why 26 was chosen as the cutoff.
Why should there be a distinction between
people under or over 26 when it comes to savings for their future?
Be assured that United Spinal continues to
advocate for policy and legislation improvements on your behalf. We could not be as
successful as we are without your support and
advocacy efforts. Together we can keep working to fix legislation like the ABLE Act and
pass more legislation that improves people’s
lives. Thank you.
Protecting Access to Complex Rehab Technology
M
edicare’s Durable Medical Equipment
benefit category was created over 45
years ago to cover the basic medical
equipment needs of elderly individuals. Over
time technology has advanced to include
highly configurable manual wheelchairs, power
wheelchairs, adaptive seating and positioning
systems, and other specialized equipment such
as standing frames and gait trainers.
This technology — called complex rehab
technology — is prescribed and individually
configured to meet the specific medical needs
of people with disabilities and maximize their
function and independence. Unfortunately these
specialized products are classified within the
broad DME benefit category even though CRT
is very different from standard DME.
To protect access to CRT for people with
disabilities, the “Ensuring Access to Quality
Complex Rehabilitation Technology Act” has
been introduced in Congress. The bill will
create a separate benefit category for CRT
within Medicare like the one that exists for
Orthotics and Prosthetics (custom braces and
artificial limbs).
Like Orthotics and Prosthetics, the CRT
provision involves configuring a set of technology to the specific medical and functional needs
of the individual, working through a clinical
team model, necessitates credentialed and
experienced providers, and requires ongoing
supporting services.
Passage of the separate benefit category
legislation will provide needed improvements
in the areas of coverage, coding, and quality
standards. The bill is designed to:
• Develop clearer and more consistent coverage policies to better address the unique needs
of individuals with varied disabilities.
• Establish strong and enforceable provider
standards to promote better outcomes and
consumer protection.
• Provide stability to ensure continued
access to products and services and an environment that encourages product research and
development.
• Produce an improved coverage model
within Medicare that can be offered to Medicaid and other payers to follow.
A separate benefit category for CRT will
provide needed changes to protect access that
will benefit not only Medicare beneficiaries
with significant disabilities such as spinal cord
injury, amyotrophic lateral sclerosis, multiple
sclerosis and spina bifida, but the Medicare program as a whole. In addition, once these needed
changes are put in place within the Medicare
program they will spread to state Medicaid
programs and private health insurance plans.
Legislative Progress
Getting legislation introduced and passed in
Congress is a long and arduous process. When
the separate benefit category initiative began,
CRT stakeholders were informed that the
process of getting the bill passed would be a
marathon, not a sprint. And so it has been. But
while we have not crossed the finish line, we
have passed major mile markers each year and
are making solid progress to ultimate passage.
Here’s an overview of the yearly progress:
2012: CRT bill initially introduced in April
in the House of Representatives; ended the year
with 36 representatives signed on.
2013: New session of Congress; bipartisan
House bill reintroduced and bipartisan companion Senate bill introduced; ended the year with
86 representatives signed on to the House bill
and seven senators signed on to the Senate bill.
2014: Continued outreach to Congress;
ended the year with 168 representatives signed
on to the House bill and 22 senators signed onto
the Senate bill.
2015: New session of Congress; bipartisan House and Senate bill reintroduced; getting last year’s co-sponsors to sign on again,
securing new co-sponsors and focusing on
passage this year.
As noted above, while we did not get the
CRT bill passed in the last congressional session, we have established an excellent foundation to move it over the finish line this year. We
ended 2014 with 168 representatives signed on
Vanessa Cizmar demonstrates her standing
chair, which is an example of complex rehab
technology.
to HR-942 and 22 senators signed on to S-948.
That’s 190 members of
Congress supporting
CRT legislation!
This progress is
Don Clayback
a direct result of a
Executive Director,
wide cross section
National Coalition for
of CRT stakeholdAssistive and Rehab
ers taking the time
Technology
to reach out to their
representatives and
staff through emails, phone calls, social media
and in-person meetings. We know it is not easy
to do this outreach with all the other demands
on people’s time. But we have proven that commitment and persistence pays off. An important
part of this progress is the broad support from
over 50 national consumer and medical and professional organizations that have formally gone
on record supporting passage of the legislation. Our progress is significant and we need to
recognize that. Everyone’s hard work is paying off and the CRT message is spreading.
However, our main objective remains to get the
bill passed. Passage is critical to protect access
to CRT for people with disabilities who rely
on this specialized equipment and the related
supporting services. The need for this legislation is increasing as the threats and challenges
to access continue to grow at both the federal
and state levels.
What Lies Ahead for 2015
This year is of particular significance as the
country celebrates the 25th Anniversary of the
Americans with Disabilities Act. As we look
to 2015 we have a great base to start from. The
legislation has been reintroduced in Congress
and has been assigned bill number HR-1516 in
the House and S-1013 in the Senate.
While the ADA has resulted in improvements in community access, those improvements can represent unfulfilled promises if
someone can’t get the right wheelchair. This is
the perfect year to make sure the “Ensuring Access to Quality Complex Rehabilitation Technology Act” passes and the coverage, coding, and
quality standards needed to promote and protect
access for wheelchair users are put in place.
To take action now on the CRT legislation
and urge your members of Congress to sign on
to the bill, visit our website at www.unitedspinal.org/separate-medicare-crt/.
JUNE 2015
47
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48
NEW MOBILITY
Overcoming Recurring
Depression
T I M
G I L M E R
Illustration by Mark Weber
B Y
Five years following my plane crash that resulted in SCI and
paralysis at the age of 20, I fell into a psychological and
emotional pit that seemed to have no bottom, no way out.
Looking back, it was worse than the immediate aftermath of the
crash itself. While my accident was life-changing, my descent
into severe depression could have ended in suicide.
At 25, I was without hope, no longer able to imagine a future.
At the time, the term “clinical depression” did not exist.
Nor did “post-traumatic stress syndrome.” All I knew was that
my life had completely fallen apart, and I seemed helpless to
fix it. To an outside observer, I must have seemed catatonic
sitting in my wheelchair — silent, still, downcast, no expression on my face, no discernible emotion, not really there. But
on the inside I was holding on for dear life, caught in what
seemed like a hopeless hell.
JUNE 2015
49
A lethal mix of unresolved issues had grown undetected like a
cancer within me — grief from my loss of physicality, grief for my
friend who died in the crash, survivor’s guilt, rejection by a longtime girlfriend, drug and alcohol abuse, no job, no direction, no
friends, no place to call my own. My parents rescued me from a
drug house and brought me home, then decided I would be better
off in a state hospital, where I would have been forced to submit to
electroconvulsive shock therapy.
Fighting Back
Ironically, when I learned they were making plans to have me
committed, I discovered an emotion that was still very much alive
in me — fear. The threat of having my brain fried aroused me
from my catatonia. Desperate, yet unable to articulate my fear, I
appealed to my brother to speak for me. I told him I would consent
to going to a psychiatrist of my own choosing, but if my parents
insisted on sending me to a state hospital, I would fight and scream
and become the wacko they thought I had already become.
That single impulse of resistance was the beginning of my
recovery. What follows is my personal account of some of the
things that proved effective during that yearlong battle — all of
which are now recognized as being important to overcoming
clinical depression.
We Are Not Alone
I saw a psychiatrist three times before I concluded he could
not cure my depression. I threw away the pills he prescribed,
refused to
go back and
embarked
alone on my
journey to find
a future. My decision was based on my
desire to confront my
personal demons rather than
temporarily sedate them. But this
is not advisable for everyone, especially those contemplating suicide.
Loneliness and feeling alone are characteristic of severe
depression. Everything is inner-directed. The external world and
everyone in it seem cold and distant. At times I felt like a rat in a
maze, trapped in the dark corridors of my own brain. I got worse
before I got better.
It sometimes takes getting worse, reaching a point of extreme desperation, before we are moved to take action. In my
case, my action was praying, something I had not done in years.
Of course I had prayed for my life while lying in the wreckage
of the plane, and later for a healing miracle in the hospital, but
I had long since given up. This time, praying from the depths
of depression, completely humiliated and terrified, tearful and
desperate, my simple and heartfelt prayer could be summarized
in three words: Lord, help me!
It is not my intention to convince anyone that prayer is a
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50
NEW MOBILITY
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cure in such
situations, or
that faith can
be manufactured
by sheer will, but
something happened
that night in the quiet
of my bedroom. It was the
moment of my most desperate
need, the moment I now recognize
as the low point in my life. After praying,
a peaceful calm fell over me for the first time
since my plane crash more than five years earlier.
Prayer is related to mysticism, not logic, and when we give
ourselves up to it, it is an acknowledgement that we want to
make contact with a spiritual reality — invisible yet somehow
omnipresent — where hope exists. Connecting hope to something greater than ourselves is the first step toward recognizing that we can choose not to feel alone. We may not be able to
change our physical circumstances and bring back what we have
lost, but we can seek to cultivate connectedness, hope and inner
peace. And when we do, we feel connected to life in a new way.
"Where Words Fail, Music Speaks"
— Hans Christian Andersen
For my 26th birthday, which I spent alone in my bedroom, my mother gave me a classical guitar. She must have
seen that during my depression music had abandoned me,
or perhaps I had abandoned it.
Prior to my accident, I had taken an undergraduate class in
Beethoven for non-music majors at UCLA taught by a respected
professor and acclaimed classical musician. Feri Roth made it
his mission to initiate us into the great composer’s mystique.
The “class” met in an auditorium that held 400 people. After
putting a Beethoven symphony on the sound system, Roth
would dim the lights and in his distinct accent instruct us to
lean back in our seats, close our eyes and give ourselves up to the
genius of “Lootfick Fon Baytofen.” As we listened, he patrolled
the aisles with arms crossed, calling out anyone who dared
open his or her eyes or make a disrespectful peep. Even the shallowest among us — football players looking for an easy grade
— fell under the spell of the genius whose moving symphonies
soothed the savage beast within us, if only until the class ended.
Left alone in my bedroom with my new stringed companion,
I rediscovered making music, and more importantly, listening
to it. Three or four times a day I picked up my guitar and tried
to teach myself chords and pick out simple melodies. I became
reacquainted with a purity in music that is absent with words —
a calming, relaxing, reassuring kind of communication. Alone
with my depression, the magic of music spoke to my heart and
reintroduced emotion into my life.
Music therapy is now a recognized treatment for depression,
and many people have found it a reliable tool — more like a
soothing elixir — that reawakens emotions that we have buried
deep within ourselves, perhaps out of fear of being hurt or disappointed. But unlike real-life relationships, music can be experienced without risking rejection or failure. We don’t have to be
musicians, nor do we have to perform. It requires of us only that
we listen and open our hearts.
Breaking Out of Isolation
Once my inner demons were somewhat placated, I knew I had
to face the world outside my bedroom, but I was terrified of going out in public. So I forced myself to take baby steps.
First, realizing that I had neglected physical exercise and activity for many months, maybe even years, I put on my ill-fitting
leg braces and ventured into the backyard, where no one would
see me. I stood with braces and crutches and sniffed the air and
looked at the trees. And that was all. Just standing outside was a
challenge — and a success.
The next day I attempted to walk in the backyard, but fell
hard. With my face in the grass, I remembered how I had been
taught to get up with crutches on stiff, braced legs. After several attempts, I succeeded. Falling may have been the best thing
that could have happened. It forced me to use my body, to strain
and sweat just to stand upright. I began to walk on braces and
crutches regularly for exercise, gradually moving from the
backyard to the front yard, where people might see me. Fear
and self-consciousness began to lose ground.
In overcoming depression, it is helpful to breathe fresh air and
do whatever kind of exercise or movement that is possible for you
— to get out of your head, out of isolation. I know this was helpful
for me, and there is a scientific basis that supports it. [For more
details, see “Exercise as a Natural Mood Elevator,” on page 54].
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51
Rediscovering Purpose
Having regained a semblance of confidence, I decided to take a
trip to the library in the small town where I grew up. I did not realize it at the time, but I went there seeking a purpose to fill the void
that hopelessness had created. I browsed in the stacks, found a few
books that interested me and checked them out. That simple interaction with the smiling librarian reintroduced me to the public
world. It almost seemed as though I had gained a friend.
One of the books I checked out was about the theory of nerve
impulse transmission — how the brain transmits messages and
receives feedback from the body. I did not really understand my
paralysis, so why not confront it and study it? I became fascinated with the fact that my spinal cord was a complex electrochemical conduit that was not completely understood by the
scientific world. Most fascinating was the way that impulses
traveled along the cord. A nerve impulse must leap across millions and millions of synaptic gaps at incredible speeds to make
a simple movement happen. The gaps themselves — electrified
space, not physical matter — captured my interest.
I knew that somehow there was hope in the spark that
jumped from neuron to neuron. Physical matter dies when
damaged, as it did in my injured spinal cord. But as long as
there is a spark, life can go on.
That metaphor resonated within me. Because of my injury, part
of me had died, and now, six years after my accident, I was able to
accept the truth of my paralysis. My damaged cord would prevent
me from walking and regaining my prior life, but that spark — the
spark of life — was alive and well in my brain and heart.
I was alive, I was not alone, and I was ready to re-enter the
world. Day by day I ventured out, then returned to my safe haven. With the help of my family, I got a menial part-time job and
saved money since I was still living at home. One year following
onset of severe depression, I accepted the invitation of friends to
join them in a trip overseas. It was a long ways from my backyard
to Europe, but just going there was proof that I had recovered.
Over the next 20 years, until the age of 45, depression returned from time to time, usually during periods of extreme
stress. Each time I was able to look back to the “Dark Ages” I
experienced at the age of 25 and rediscover the path I had taken
to climb out of the pit. Gradually, the episodes of depression
became less serious, less prolonged, and stopped altogether. It
has now been 25 years since my last episode, and while I can’t
say I am free of it, even at the age of 70, I am now certain — if it
should return — I know the way out.
:
Depression and Suicide What the Experts Say
B Y
According to Michael DeVivo, an epidemiologist at the University of Alabama, Birmingham, people with SCI commit suicide
nearly four times as often as the general
population. It is the seventh leading cause
of death among people with SCI.
What drives people over the edge to
commit suicide?
When that question was posed to
a number of rehab psychologists, they
all cited the same risk factors. Number
one on all their lists is depression, with
one study suggesting that 75 percent of
SCI suicides demonstrated substantial
evidence of depression, despite less than
40 percent having been diagnosed with
clinical depression.
Other risk factors mentioned, in
no particular order, were drug and/or
alcohol abuse, chronic pain, social isolation, loneliness, financial problems, and
perceived poor health. In other words,
nearly every aspect of SCI (or disability
in general) puts people at greater risk
of suicide. And when problems pile one
upon another, finding a way out can
begin to seem hopeless. “When people
don’t recognize any solutions available
52
NEW MOBILITY
R I C H A R D
H O L I C K Y
for their problems,” says rehab psychologist and researcher Allen Heinemann of
Northwestern and Research Institute of
Chicago, “suicidal ideation may emerge.”
Estimates of depression among people with SCI range from 11 percent to 37
percent. The University of Washington’s
Northwest Regional SCI Center puts the
rate at about 20 percent, or about one in
five wheelers. Clinical depression is much
more serious than your garden-variety
case of the blues or being down in the
dumps. It often involves feelings of helplessness, hopelessness and worthlessness. Hopeless, as in thinking nothing will
ever change and things will always be
this bad; helpless, as in I have no power
to change things and make them more
tolerable; and worthless, as in I will never
amount to much, given my disability.
But there is some good news. Suicide
risk drops dramatically once people get
past that seven- to 10-year mark following onset of injury, which means most
of us find purpose, meaning and worth
following disability.
And we also know of many protective
factors that make suicide less likely. Scott
Richards, a psychologist at Spain Rehabilitation Center in Birmingham, Ala., sees
social support as “huge,” and a study of his
found greater access to the larger world,
often in the form of reliable transportation, a significant factor. Craig Hospital
psychologist Lester Butt speaks of quality
rehab and the introduction of what is still
possible — function-wise, job-wise and
recreation-wise. Some type of meaningful
activity or pursuit, be it work, family, faith,
volunteering, mentoring, can be the key
to optimism, hope and self-worth. Strong
religious beliefs also serve as a buffer, as
does a sense of responsibility to family
and having children in the home. Heinemann cited the value of physical activity
— 150 minutes of aerobic activity a week
— as depression prevention.
All these factors foster a more positive self-image and promote optimism,
positive self-talk and useful coping skills.
The takeaways would be to diligently
monitor for the risks, and aggressively
pursue, build and fortify protective skills,
networks and activities to successfully
challenge the onset of a worthless/hopeless/helpless cycle.
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Exercise as a Natural Mood Elevator
B Y
R
B O B
V O G E L
I’m in a fog that sucks away interest in
activities, clouds my thinking and creativity and puts me in a state of fatigue
that no amount of sleep, napping or
coffee can ward off. How much of this
is due to being a T10 complete para,
30 years post-injury, is difficult to pinpoint. I do know my weapon against
depression is exercise.
When depression floods me with
fatigue, a nap only leads to another
nap and another. What I really need
is exercise. But depression tries to
convince me I don’t have the energy.
Fortunately, my service dog is often
the catalyst that breaks the cycle. Taking my dog on a brisk 30-minute push
often gives me the energy to hop on
my handcycle — which is mounted on
a stationary trainer — to get my heart,
lungs and endorphins flowing. About
half way through a good exercise
session I can feel my
energy, mood and
creativity return.
Any exercise or
activity is better than
none. And people
who want an arm
peddle workout but
can’t transfer into a
handcycle and/or
have limited hand
function have a variety
of options, too [see
Resources].
Researchers have
also found that exercise is beneficial specifically for depression
in people with SCI. A
September 2004 Journal of Rehabilitation
Research and Development article concluded
that for people with
SCI, recurring exercise
leads to significant
Bob Vogel finds that engaging in exercise helps to keep
improvements in pain,
depression at bay.
esearchers have figured out how
exercise helps fight depression.
An article on the Mayo Clinic
website — “Depression and Anxiety:
Exercise Eases Symptoms” — explains
that exercise helps ease depression by
releasing “feel-good” brain chemicals
including endorphins, neurotransmitters and endocannabinoids.
These naturally-produced bodily
substances reduce pain and foster feelings of well-being that recent studies
suggest are responsible for “runners
high.” In order to get significant improvement in depression symptoms,
the Mayo Clinic suggests 30 minutes
or more of exercise a day for three to
five days a week. Exercise also reduces
chemicals in the immune system that
can worsen depression.
I’ve had an on-and-off battle with
depression for years. To me, it feels like
54
NEW MOBILITY
stress and depression.
Another study, published in October
2014 Disability Rehabilitation, concluded that the effect of exercise may be
comparable to taking antidepressants
and undergoing psychotherapy for
mild to moderate depression.
Bobbie Humphreys, 59, in her 42nd
year as a C5-7 quad, keeps depression
at bay by stretching every day and
doing an hour of seated aerobics three
times a week [see Seated Aerobics
Video in Resources].
Terri O’Hare, 57, of Albuquerque,
N.M., has been a wheelchair user for
almost four years due to a progressive neuromuscular condition called
Charcot-Marie-Tooth disease. O’Hare
went into several years of depression
after deaths in her family and personal
trauma. She went to counseling for
two years and is on a generic version
of the antidepressant Celexa. “The
counseling and medication saved
me,” she says. “But what is healing
me is pushing my chair on a 1.5 mile
accessible trail that travels close to the
Rio Grande. Getting physical exercise,
getting my blood moving and being
so close to nature in such a beautiful
place gives me a sense of life after a
few dark years of depression.”
If you suspect you have depression,
it is important to discuss it with your
doctor. And do not stop taking an antidepressant without consulting your
doctor, as abruptly stopping some
antidepressants can cause withdrawal
symptoms.
Resources
• 16 Exercises for Quads, New Mobility:
www.newmobility.com/2014/10/16exercises-quads/
• Handcycle Trainers for Fitness: www.
newmobility.com/2013/12/handcycletrainers-fitness/
• Seated Aerobics Video: www.seated
aerobics.com
SERVICE
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4/24/2015 9:48:46 AM
INNOVATIONS
Bold New World of Power Chairs
By Mark E. Smith
A
s a reader of this column, you
might recall my writing last
year that there were some
innovative rumblings in the
power chair marketplace. What none of
us knew at the time was that those rumblings would hit the market in 2015 like a
8.0 magnitude earthquake of innovation.
They would shake up the world of power
chairs as we know them, featuring technologies that aren’t just captivating, but
life-changing.
It Slides, Glides, and Runs off Your
Smartphone
Imagine taking the most cutting-edge
technologies out there and rolling them
into a power chair, drawing from smartphones and NASA. That’s exactly what the
recently introduced WHILL Model A power
chair accomplishes. As a rear-wheel-drive
power chair, the Model A eliminates front
casters, replacing them with 9.8-inch
omni-directional casters that don’t pivot,
but are made up of a “wheel” of rollers
that glide both forward and reverse, as
well as sideways. The result is front wheels
that eliminate swinging casters, allowing
the power chair to pivot effortlessly in
tight spaces, and they’re powered for allwheel-drive outdoor performance. It’s the
same technology used by NASA and the
military for capable, maneuverable exploration vehicles.
Next, the Model A incorporates
Bluetooth and smartphone app technology to control every aspect of the
power chair. While there’s a traditional
— though highly ergonomic — joystick
for driving, your smartphone controls the
56
NEW MOBILITY
power chair, from driving modes to programming to diagnostics to GPS location.
What’s really impressive, however, is that
you or an attendant can literally drive the
Model A via your smartphone, using the
screen as a finger pad. For example, you
can transfer into bed, and via your smartphone, remotely park your power chair
across the room.
The Model A also features an exceptionally unique seating system (although
it must be noted that it’s intended for
those who can self-support in a manual
wheelchair-type seating, not meant as
high-end complex rehab power chair
seating). With a low backrest, sleek armrests and a 90-degree footplate, the user
is seen before the power chair. What’s
more, for table access or transfers, the
QEdge
armrests flip back and the power seat
slides forward, offering optimal access.
With a top speed of 5.5 mph, a battery range of 10.6 miles, and all-wheeldrive, the WHILL Model A offers not just
cutting-edge technology, but real-world
functionality.
Elevate into the World at Eye Level
If you’ve used a power chair with an elevating seat during the last three decades,
you know the limitations: they take forever to elevate, then the power chair either
locks out driving or slows the speed to an
unusable pace. And, did I mention that
unsettling feeling of instability, as if sitting
on a flag pole?
Quantum Rehab’s new iLevel power
chair system allows 10 inches of seat
elevation in just 24 seconds (compared to
the industry standard of 45 seconds). That
in itself is an improvement, but the gamechanging technology comes in once
you’re elevated, where you can now drive
the power chair at walking speed, indoors
and out — with a safe, intuitive stability
system built in. As the seat elevates, iLevel
stabilizes the caster arms, still allowing
suspension for climbing thresholds and
such, but prevents the power chair from
pitching, even on a 7-degree ramp.
For those with very high-end complex
rehab needs, iLevel offers functional elevation while maintaining advanced positioning components, from power tilt to recline
to an elevating foot platform, allowing all
to now access “standing height” mobile
elevation. When combined with the
ability to drive at a real-world walking
speed while fully elevated, accessibility
and social interactions dramatically open
forward, a valuable feature for reaching
kitchen environments when cooking, or
in accessing closets. The F5 also shifted
from the long-used 8-inch single-post
seat lift to a new, more stable 3-point,
14-inch seat lift mechanism.
Of course, Permobil didn’t overlook
the powerbase, which features a speedswept aesthetic, new suspension, and
rear-housed batteries to add stability and
eliminate the need for protruding front
anti-tip wheels.
up — from increased visibility in crowds
to ease of grocery shopping to socializing
at mixers to sitting at high-top tables to
strolling the mall shoulder-to-shoulder
with your spouse. If you think of traveling
down a crowded college hall, elevated
at walking speed versus being at seated
wheelchair height, you can clearly recognize the real-world benefits of safe, mobile
elevation at eye level.
iLevel is interfaced with Quantum’s
new Q6 Edge 2.0 powerbase, which offers
a single-stage gearbox for responsiveness,
6-wheel independent suspension, and a
standard 6 mph top speed, all wrapped in
bold, take-on-the-world body shrouding.
Taking a Stand in Innovation
When it comes to power chair standing
technology, Permobil has been the leader
for decades. And, the new Permobil F5
Corpus VS demonstrates that heritage —
all in a stunning, eye-catching package.
In the past, standing mechanisms
have been essentially a seating system
atop a powerbase. With the F5, however,
Permobil integrated the two, where the
power seating and standing mechanisms
Not Just Reinventing the Wheel
Corpus
nestle into the powerbase for an ultraclean appearance.
While the power standing system has
been redesigned for durability, ergonomics, and functionality (the F5 allows you
to drive while indoors at reduced speed
while standing), other life-enhancing features are offered as well. A new anterior
tilt feature allows the seat to lift up and
If you look at these three truly impressive products — the WHILL Model A,
Quantum iLevel, and Permobil F5 Corpus
VS — it’s clear that the mobility industry
isn’t merely reinventing the wheel. Rather,
the mobility industry is reinventing the
power chair.
Resources:
• Permobil, 800/736-0925; www.permobilus.com
• Quantum Rehab, 866/800-2002; www.
quantumrehab.com
• WHILL, 844/699-4455; www.whill.us
The goal of the SCI Rehabilitation Program
at Shriners Hospitals for Children — Chicago
is to assist each child with a spinal cord injury to reach his or her optimal level
of health and independence in the home, at school and in the community.
Comprehensive rehabilitation, medical and surgical care are provided in both
the inpatient and outpatient settings regardless of the patients’ ability to pay. In
addition to comprehensive rehabilitation programs, Shriners Hospitals for Children
participate in state-of-the-art research programs and clinical device and drug trials.
Care is provided by a multidisciplinary team in which the
patient and family are important members.
shrinershospitalsforchildren.org/chicago
facebook.com/shrinerschicago
twitter.com/shrinerschicago
2211 N Oak Park Ave., Chicago, IL 60707
Do You Know a Child
Who Needs Expert
Specialty Care?
For a consultation call:
773-385-KIDS (5437)
JUNE 2015
57
RAISING A RUCKUS
Since one out of four of these kids will be
disabled in their lifetime, I figure they should
know what they are in for.
By Allen Rucker
Who Cares?
I
was pontificating in front of a class of
college students the other day, giving
an impassionate dissertation on the
painfully long struggle of people with
disabilities for a seat at the table, any
table, when I realized only four people
were listening. Three were napping, a
half dozen were texting on their iPhones,
and the rest were just staring at me like
I was speaking Chinese. The four that
seemed to be listening were whacking
away furiously on their laptops, appearing to be writing down every illuminating word out of my mouth. But, then
again, how did I know what they were
writing? I even stopped speaking a time
or two to see if they would stop typing.
They did, which made me feel good.
Then again, I thought later, maybe they
were hip to my trickery and played along
accordingly.
Driving home, it occurred to me:
Sure, they didn’t care, but why should
they care? Unless they themselves are
disabled, or their mother, or younger
brother, what does disability have to do
with their lives? Other “protected” classes, as they are called — blacks, Hispanics,
LGBT (in some locales, anyway) and last
but not least, women — have a significant group presence in society. Maybe
they don’t have all the status and influence they’d like to have, but they have all
exercised enough real social and political
58
NEW MOBILITY
power to be taken seriously. When one
out of three Americans will be Hispanic
by 2050 and a gay man, Tim Cox, runs
the biggest company by market value in
the whole freaking world, then it makes
sense for bright college kids to pay attention to Hispanics and gays. And women?
Since 56 percent of all college students
are women, they no doubt are interested
in themselves.
But are there people with disabilities
with real, game-changing power in
America? One. Greg Abbott, governor
of the second largest state in the union,
Texas. Does he care about people with
disabilities? If you take him at his word
— the words “disability rights” never
crossed his lips in his campaign for the
governorship — the answer is not a whit.
He’s the Clarence Thomas of crips, the
poster boy for a whole new political category: DINO. Disabled In Name Only.
Which brings me back to the college students. If they are being asked
to care about the disabled simply out
of the goodness of their hearts and for
the betterment of the republic, you’ve
lost them. Sure they have hearts, at least
some of them, and sure they care about
the republic, at least in poli-sci class, but
many if not most of them are looking at
a huge college debt in the $20,000 to
$50,000 range and 50 percent of them
— real statistic — will end up in jobs like
sales clerk at Banana Republic or waiter
at Red Lobster. They really don’t have
time to think about a whole class of people who have absolutely no immediate
impact on their lives. They have to spend
their non-drinking hours — both of them
— on acquiring real job skills.
The solution? Since one out of four
of these kids will be disabled in their
lifetime, I figure they should know what
they are in for. I’d make every kid in the
class go through a Scared Straight program about life after disability. Instead
of a day in jail, it would be a day and
night in a smelly, run-down “care” facility.
They’d be given clunky wheelchairs and
lumpy beds, be forced to eat dog food
in the shape of “Heavenly Meatloaf,” be
awakened every 15 minutes at night
just like they do at Guantanamo, have to
listen to a roommate’s television playing
nothing but “I Love Lucy” in Spanish,
and occasionally be locked in a closet
for insubordination. “Don’t you get it?”
one pumped-up male nurse will shout in
their faces, spittle dripping, “if you don’t
fight for the rights of the disabled, this is
how you will end up! Forever!”
If that doesn’t work, then plan B is for
all students with disabilities to get MBAs,
ascend to the top of a Fortune 500 company, or at least a Banana Republic store,
and make every nondisabled employee’s
life miserable. That’ll teach ’em to care.
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After all, diversity has a real power. It’s an
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That is why we are proud to support the
United Spinal Association’s efforts on behalf
of all people living with a spinal cord injury
or disease.
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JUNE 2015
61
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Wheelchair Accessible Home for Sale
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Located in Utah. Call/text Greg Gardner
at 801-891-6730 for info/pictures. Bought
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1955 Pontiac Star Chief Catalina
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Antique Harley Davidson with hand
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Venice & Ljubljana
Accessible Italy by train
Vietnam-Thailand-Cambodia
Kenya-Tanzania-Zambia-South Africa
800.846.4537
www.accessiblejourneys.com
ADDRESS CHANGE
Change your address? If so, please provide New Mobility with your updated
information. Full Name, Street Address,
City, State & Zip Code are needed for
both the old & the new address. Please
allow 6-8 weeks for this change to be
processed. Please submit your request
electronically to: mkurtz@unitedspinal.
org or at www.newmobility.com Or call:
800-404-2898 x7203
TO PLACE A CLASSIFIED
AD IN NEW MOBILITY
Call 800-404-2898, ext. 7253
or email your request to
[email protected]
Print Rates:
• $1.30 per word
• $1.00 per word
for USA Members
• Boxed Ads - $105 per inch
• Pre-Payment Required:
VISA, MasterCard,
AMEX, Discover
• All Paid Print Classifieds get a
1 month FREE Web Classified
Online Only Rate:
1 month = $16
3 months = $36
6 months = $72
9 months = $108
12 months = $144
Permobil’s 2015 PowerTrip is bringing
you THE BEST IN MOBILITY!
http://permobilpowertrip.com/events/
Wellspect HealthCare launches improved website - the industry’s go-to resource for Clean
Intermittent Catheterization (CIC) education,
LoFric® product info and support. 855/456-3742;
www.wellspect.us
Bronze
Jump start your sex life and get
expert advice at medicalvibrator.com or
call 714-649-9284 we also specialize in
fertility and incontinence.
United Spinal Business Member Updates
Gold
FOR SALE
USA Jeans makes pants designed for sitting. Call Darlene at 800-935-5170 or visit
www.USAJeans.net
Scootaround offers 10% off to United Spinal
members going to Orlando. Promo code: SCOOTORLANDO. 888/441-7575; www.scootaround.com
NuMotion: Disability advocate and activist
Finn Bullers has become a guest blogger on
Numotion.com. http://www.numotion.com/newsresources/blog/join-me-in-wild-crazy-ridet-that-mayjust-change-the-disability-world/
Supporters
Coloplast
The Comfort Company
DiMarco Araujo Montevideo Attorneys at Law
KD Smart Chair
Michigan Auto Law
Mobility Funding Group
Sleepsafe Beds
Surehands Lift & Care Systems
Synapse Biomedical
For more information on how you too can support United
Spinal and become a business member, please contact
Megan Lee at [email protected] or 718/803-3782,
ext. 7253.
Acknowledgements on our website, in New Mobility, in
United Spinal e-news or any other United Spinal publication
should not be considered as endorsements of any product
or service. It is the individual’s responsibility to make his
or her own evaluation of such. To see a complete listing of
United Spinal business members, visit www.spinalcord.org/
resource-center/nscia-business-members.
newmobility.com/classifieds
JUNE 2015
63
CRIP BUZZ
THE BEST OF DISABILITY BLOGS AND BANTER
Awkwardly Awesome Disability Moments
THE PRICE WAS RIGHT …
When Danielle Perez, a wheelchair using comedian from Los Angeles, won a treadmill on The Price is Right, Twitter practically exploded from the irony. “I kept thinking it
was a big joke,” said Perez to the television channel, KTLA. “But there was no irony in
their cheers or applause.” She says there was an awkward pause right after the prizes
were announced that was edited out of the final show, but everyone at CBS seemed
genuinely excited for her that she won.
Perez, a double-amputee due to a 2004 car accident,
cracked a joke at her own expense in her May 5 tweet
saying, “When you win a treadmill on national TV but
you have no feet.”
The social media frenzy poured over into Hollywood
Reporter, Gawker, Buzzfeed and other outlets, culminating in Perez’ May 7 guest appearance on Jimmy
Kimmel Live.
“Did you realize when the curtain opened and there was the treadmill what was happening?” asked Kimmel.
“No, I was just so focused on cash and prizes,” laughed Perez. She and Kimmel shared
a few more yuks, he had her guess the price of a jar of peanut butter, and when he
asked what her plans were for the treadmill she said, “I guess I’ll just do what everyone else does, just use it as a piece of furniture.”
“I guess I like to imagine that when you won, the producers dragged the treadmill
out and replaced it with something else,” said Kimmel. Since that didn’t happen, he
showered Perez with the prize he thought she should have won: A wheelchair accessible Royal Caribbean International Cruise for her and a guest.
ACCIDENTAL
EXAMPLES OF WHAT
DOESN’T HELP
A Reddit user asked, what
is something nondisabled
people do that they think
helps, but really doesn’t?
The thread received more
than 10,000 comments,
including the following:
On being awesome just by
grocery shopping:
Carlyer10: This one time I was
leaving the supermarket and
I watched this wheeler dude
go-go gadget his SUV into
a sweet wheelchair-friendly
setup. A ramp unfolded on the
side, he scooted onto it, hit the
remote on his keychain and it
all closed back up. I shouted,
“that’s freaking awesome!”
And he thumbs-upped me.
Dilln: “Honey, some guy in the
parking lot found it awesome
that I’m disabled this morning.”
On being asked — again —
how his dad’s spinal cord
injury occurred:
ARAXION: He took a spear
to his back when hunting
gophers with his little brothers. The horrible thing is that
he made the spears for all of
them. He handled the situation very well!
Radardogfoodliradar: The
great gopher war of 1974.
www.reddit.com/r/AskReddit/
comments/33ej71/disabled_
people_of_reddit_what_is_
something_we_do/%0A
64
NEW MOBILITY
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CE NT E RE D ON Y O U
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NOT JUST A PRETTY BASE.
The F5 Corpus goes beyond good looks to stretch the boundries of logic.
®
How can a smaller footprint offer greater stability, or a lower seat-to-floor
height allow you to reach higher? How can faster still be more powerful at
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Experience it at permobil.com