American Association of People with
Disability Daily – Monday, 25 November 2013
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NATIONAL
OPINION: How To Do Right By People With
Disabilities. The New York Times (11/24)
EDITORIAL
How to Do Right by the Disabled by THE
EDITORIAL BOARD
Published: November 24, 2013
About a year ago the Senate fell five
votes short of ratifying an international treaty that would improve protections
for the disabled. It was an ignoble spectacle as the opponents rebuffed Bob
Dole, a former colleague and disabled veteran, who came to the Senate floor to
lobby for it. The Senate now has a chance to redeem itself.
Senator Robert Menendez, a New Jersey
Democrat and chairman of the Senate Foreign Relations Committee, has revived
the treaty, the United Nations Convention on the Rights of Persons With
Disabilities. He has held two hearings and plans a committee vote perhaps next
month. Unanimous approval leading to quick Senate ratification is warranted;
138 other countries have ratified the treaty.
The United States is the leader in
promoting the rights of people with disabilities because of the Americans With
Disabilities Act of 1990. But projecting that globally has been hampered by the
failure to ratify the U.N. convention in the four years since President Obama
signed it. As Secretary of State John Kerry said last week, when the treaty
countries gather to discuss accessibility and employment standards for people
with disabilities, “we’ve been excluded because we’re not a party to the
treaty.”
Practically, that means America is
weakened in its ability to press for fire alarms with flashing lights so people
who are deaf will know when there is an emergency or for sidewalks with curb
cuts for people in wheelchairs. Such advocacy does not just benefit foreigners.
Disabled Americans would find it easier to travel, study and live abroad if the
United States could win improved conditions.
Previously, a right-wing fringe defeated
the treaty with the absurd claims that it “crushes” American sovereignty and
leads to bureaucrats’ taking disabled children from their parents. It was always
hard to take such nonsense seriously. Now, with a growing number of veterans
groups and corporations backing the treaty, perhaps the Senate naysayers can be
persuaded to do what’s right.
Meet The New York Times’s Editorial Board
»
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STATE/LOCAL
Screening children for mental health
issues may not guarantee care. The Boston Globe (11/25) by Chelsea Conaboy
Six years after the state launched an
unprecedented effort to address the mental and developmental needs of young
children, doctors in Massachusetts are screening more children for behavioral
health concerns than any other state.
Nearly 7 in 10 Massachusetts children
under age 6 in low-income families were screened in 2011 and 2012 — more than
twice the rate in the United States as a whole, according to data released this
month by the Massachusetts Budget and Policy Center as part of the national
Kids Count report. Doctors in North Carolina, which had the second highest
rate, screened just over half of this group of children.
“Massachusetts is an outlier — in this
case, an outlier in a good sense,” said Noah Berger, president of the policy
center. “We have made significant changes.”
But, has the success of pediatric
screening led to better behavioral health care in the state? That’s a question
researchers and physicians say they can’t yet answer.
Doctors were required to screen children
who are covered by Medicaid after the state lost a landmark court case in 2007.
A federal judge determined that the state had failed to provide good early
diagnosis and treatment for poor children with mental illness.
The screenings, a questionnaire that
parents fill out before a regular check-up with the pediatrician or family
doctor, were meant in part to identify young children who could benefit most
from early treatment, in some cases avoiding long-term problems. They are not
used to make a diagnosis.
As many as 1 in 5 children experience
some sort of mental illness or developmental disorder in a given year, though a
smaller number are seriously impaired by their condition. In 2012, about 7.5
percent of screening checklists identified a behavioral health need among
children on Medicaid, according to state data.
Certainly doctors and families can’t
address a child’s condition if they don’t know about it. But getting the
children who are flagged by the screenings connected to the care they need
remains a major challenge.
Doctors and advocates cite a host of
obstacles: inadequate mental health training for primary care doctors, a dearth
of pediatric psychiatrists, and persistent stigma around mental illness that
makes some families reluctant to talk about the issues their child is facing.
It is difficult to track how often a
positive screening leads to appropriate follow-up care; the state Medicaid
program has begun reviewing data but has not released any figures. Sometimes
the first step is simply an in-depth conversation with the pediatrician. And,
if a doctor refers families to a specialist, the family doesn’t always make, or
keep, an appointment.
“Mental health screening is not the same
as screening for anemia or lead poisoning,” said Dr. Karen Hacker, a former
director of the Institute for Community Health at Cambridge Health Alliance.
“It’s how people feel and how they identify their symptoms, and it’s at a given
moment in time.”
Some pediatricians were initially reluctant
to start screening their patients. The feeling, said Dr. John Straus, director
of the Massachusetts Child Psychiatry Access Project, was “don’t screen, if you
can’t do something about it.”
The Psychiatry Access Project provides
primary care doctors with telephone consultations with psychiatrists, to guide
them in treating children who have signs of ADHD or simple depression or
referring more serious cases to a specialist.
Some pediatricians began screening most
patients, not just those on Medicaid, as they became more familiar with the
checklists and as commercial insurers began paying them to use the tools —
typically a few dollars more than the $9.73 that Medicaid pays.
As screening in Massachusetts has grown,
so has demand for physician consultations with mental health specialists,
Straus said. His program is used each year by about 88 percent of primary care
practices that see children, he said.
The access project has become a national
model for filling the gaps in pediatric mental health care. Because a mother’s
mental health affects her child, there are now efforts to expand the program to
collaborate with obstetricians to screen mothers for mental illness during pregnancy.
Straus, who also works for the
Massachusetts Behavioral Health Partnership that manages the mental health
needs of many people on Medicaid, said the pediatric screening tool has
succeeded in starting the conversation about behavioral health with parents,
even if they are reluctant at first to acknowledge problems.
“It’s sort of like asking, how many
cigarettes do you smoke?” he said. “That doesn’t mean tomorrow you’re going to
stop. We still ask every time and have a discussion, because it moves people
along toward making a move.”
The stigma of mental illness, though
still a factor, is decreasing, and families are more willing to seek help, said
Dr. Steven Schlozman, a child psychiatrist and associate director of the Clay
Center for Young Healthy Minds at Massachusetts General Hospital. That means
demand for treatment is rising. Massachusetts, like much of the country, has
too few pediatric specialists to keep up.
“Most of the child psychiatrists I know
are kind of drowning,” Schlozman said. “We love our work, but it’s very hard to
tell patients that we can’t see them because we don’t have time.”
Schlozman said better training for
primary care physicians, to make them more comfortable in dealing with more
routine behavioral health problems in their offices, could help.
Schlozman said that payment for
behavioral health care is often a more onerous process and requires more
paperwork for families and doctors — despite state and federal rules meant to
guarantee equal coverage for physical and mental illnesses. That can deter
would-be child psychiatrists from the field and frustrate families, he said.
Even if a family makes an appointment
with a specialist, there is no guarantee they will keep it, said Dr. Greg
Hagan, interim chief of pediatrics at Cambridge Health Alliance. Problems with
transportation, language barriers, reluctance, or scheduling conflicts might
get in the way.
Hagan has joined a growing trend of
primary care doctors who share office space with mental health professionals,
to make it easier for families to see specialists. It’s not just about the
convenience of being located in the same place, he said. Families often trust
their pediatricians. The fact that he can call on mental health experts while
the family is in the room with him helps everyone.
“We have to change the model of how
families are asked to engage with the mental health system,” he said.
Schlozman said addressing early signs of
mental illness or developmental disorders is crucial. The brain goes through a
dramatic period of development during early adolescence. “If the brain gets
sick during that time, an awful lot of bad things can get set into motion,” he
said.
“These kids are our future, so what gets
in the way of our taking huge steps as a nation in taking care of them?” he
said. “I don’t know the answer to that.”
-----------------------------------
Primary care doctors use several
different checklists, such as the one below, to screen children for mental
illness or developmental disorders. This screening tool is not designed to make
a diagnosis but rather to point physicians, nurses, and families to problems
that should be addressed.
Indicate whether your child never,
sometimes, or often:
ªComplains of aches or pains
ªSpends more time alone
ªTires easily or has little energy
ªIs fidgety or unable to sit still
ªHas trouble with a teacher
ªIs less interested in school
ªActs as if driven by a motor
ªDaydreams too much
ªIs distracted easily
ªIs afraid of new situations
ªFeels sad or unhappy
ªIs irritable or angry
ªFeels hopeless
ªHas trouble concentrating
ªIs less interested in friends
ªFights with others
ªIs absent from school
ªIs dropping in school grades
ªIs down on him- or herself
ªVisits doctor with doctor finding
nothing wrong
ªHas trouble sleeping
ªWorries a lot
ªWants to be with you more than before
ªFeels he or she is bad
ªTakes unnecessary risks
ªGets hurt frequently
ªSeems to be having less fun
ªActs younger than children his or her
age
ªDoes not listen to rules
ªDoes not show feelings
ªDoes not understand other people’s
feelings
ªTeases others
ªBlames others for his or her troubles
ªTakes things that do not belong to him
or her
ªRefuses to share
Source: Massachusetts General Hospital
Chelsea Conaboy can be reached at
chelsea.conaboy@globe.com. Follow her on Twitter @cconaboy.
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Md. test exclusion rate raises questions.
The Washington Post (11/24) by Lyndsey Layton, Published: November 24 E-mail
the writer
When Maryland officials recently
trumpeted the performance of their students on national reading tests, they
failed to mention one thing: The state blocked more than half its English
language learners and students with learning disabilities from taking the test,
students whose scores would have dragged down the results.
Maryland excluded 62 percent of students
in two categories — learning-disabled and English learners — from the
fourth-grade reading test and 60 percent of those students from the
eighth-grade reading test.
The state led the nation in excluding
students on the 2013 National Assessment of Educational Progress, posting rates
that were five times the national average and more than double the rate of any
other state.
Lillian Lowery, the state’s
superintendent of schools, said she plans to review the state’s exclusion rates
and their effect on the state’s test performance.
“We do need for those students to be
included, absolutely,” Lowery said. “We want parents and students to know
exactly how they are performing, as it relates to what they’ve been able to do,
and that they’re ready to graduate from high school [being] college- and
career-ready. It is certainly data that we need to unpack and review.”
Maryland’s percentage of excluded
students is also notable because it has been increasing during the past decade,
while every other state has moved in the opposite direction.
The governing board that administers the
test has been encouraging states to include as many students as possible and
set a goal that they exclude just 15 percent of learning-disabled and English
language learners.
“States that opt out the largest
percentages of students on NAEP tend to end up with higher scores relative to
other states; so parents in Maryland may be misled as to how well their schools
are doing compared to other states around the country,” said Timothy Shanahan,
a professor emeritus at the University of Illinois at Chicago, who is an expert
in reading and reading tests.
The National Center on Education
Statistics, the research arm of the U.S. Department of Education, estimated how
every state would have performed on the reading test if it had included those
with learning disabilities and English language learners. For most states, the
change would have resulted in a point or two difference in average scores on
the test, which is graded on a point scale from zero to 500.
If Maryland had included its
learning-disabled and English learners, the state’s average score would have
dropped approximately eight points — from 232.1 to 224.5 — for fourth-grade
reading and about five points — from 273.8 to 269 points — for eighth-grade
reading. That estimated change would drop Maryland from having the
second-highest state score in fourth-grade reading to 11th place; Maryland
would fall from sixth place in eighth-grade reading to 12th place.
Clayton Best, Maryland’s NAEP
coordinator, said the state excludes so many students because it offers an
accommodation known as “read aloud” to learning-disabled students on annual
state exams. When a read-aloud accommodation is made, a person or a computer
reads the text to the student.
If a learning-disabled student uses
read-aloud, it is likely included in a legally binding agreement between the
student and the local school district — known as an individualized education
plan — that spells out the kinds of accommodation a student will receive in the
classroom and on tests.
Because NAEP does not permit the
read-aloud accommodation, Maryland can exclude such students. The Maryland
Department of Education first decided to offer the read-aloud accommodation in
1991.
“What concerns me is the implication that
this is a conscious process to eliminate students taking the test to improve
the NAEP scores,” Best said. “There’s no motivation to do that at all.”
Fewer than 10 states permit the
read-aloud accommodation, which is controversial within the community of people
with disabilities. Some think it is an important tool to help people with
severe learning disabilities engage with the written word. While having a
passage read aloud removes the decoding aspect of reading, the student still
has to make sense of the passage, so it still tests comprehension, they say.
Others think the read-aloud accommodation
defeats the purpose of a reading test.
“You no longer have a reading test. Now
you have a listening test,” said Richard Allington, a professor of education at
the University of Tennessee and an expert on early literacy. The accommodation
“allows special-education teachers, classroom teachers and the school to avoid
the responsibility of actually teaching those kids to read.”
But even advocates for people with
disabilities who support the use of the read-aloud accommodation question why
Maryland’s exclusion rate is so high.
“That number is a red flag. It stands out
this year in particular because NAEP’s (average) exclusion rate has dropped so
much,” said Lindsay Jones, the director of public policy and advocacy for the
National Center for Learning Disabilities. “It’s a cause for further
examination, absolutely.”
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INTERNATIONAL
Downs syndrome pregnancy test available
privately in Wales. BBC News (11/25)
A non-invasive early blood test for
Down's syndrome is being made available in Wales for the first time.
It is hoped the test could prevent
pregnant women from undergoing a potentially unnecessary invasive procedure
which risks a miscarriage.
At the moment the test is only available
privately and is not on the NHS.
But a support group for families with
children who have the condition said it did not see it as progress.
In the UK, 750 babies are born with
Down's syndrome each year and pregnant women are offered screening for it.
The invasive test involves using a needle
to take a sample of either placental cells or of the fluid that bathes the baby
but this procedure carries a one-in-100 chance of miscarriage.
Other conditions
Dr Bryan Beattie, a consultant in foetal
medicine at the University of Wales Hospital, Cardiff, and director of
Innermost Healthcare at the Ashtree medical clinic in Cardiff, which is
providing the new test, said it could look for other conditions affecting the
baby.
"The best test for conditions like
Down's syndrome is the amniocentesis," he said.
"They will take a small amount of
amniotic fluid from the pregnancy sack but it does carry risk of miscarriage.
"What they've now been able to do is
take a blood sample and separate off the baby's DNA in the mother's blood and
test it directly so it's reaching accuracy of about 99%, nearly as good as an
amniocentesis but without the risk.
"I don't think it's going to get
much better than 99%.
"There will always be a very small
margin for error and in something like one in 1,000 women there will still be
the need for a amniocentesis, but it does mean a lot less people will be having
invasive testing and much more accurate results.
"The interesting thing about the new
technology is that you can now start to look for other things as well, so it's
highly likely that conditions like cystic fibrosis and so on will soon be able
to be picked up in the same way."
But Katarina Barker, chairman of the 21
Plus, a support group for families with children who have Down's syndrome, said
she did not see the test as progress.
Her 10-year-old daughter has Down's
syndrome.
"My immediate feeling is that these
type of tests are loaded as a great tool but the typical outcome is that
expectant mothers opt for abortion," she said.
"My strong personal feeling is that
we should not eradicate Down's syndrome; we should better educate people
because they don't understand the condition."
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CULTURE/MEDIA
Online Dating, on the Autism Spectrum.
The Atlantic (11/25) by RULA AL-NASRAWI
My brother, Hussein Al-Nasrawi, sits in
his bedroom with his MacBook in his lap, clicking away on the keyboard. Hussein
has olive skin and lanky arms. As he stares at his computer screen, he never
cracks a smile; in fact, he doesn't smile very much in general. He logs onto
the dating site OkCupid and begins answering some questions.
“What are you looking for?” the site
asks.
“Someone to go out with,” he says to
himself as he types each letter with undivided concentration.
“How do you feel about falling in love?”
“I like to just let it happen.”
Hussein knows everything there is to know
about Disney. He can hear a song on the radio and play it note for note on the
piano. He’s funny, but he can’t tell a joke. He’s loving, but he never shows
affection. He is single, 22 years old, and autistic.
Hussein lives in the Bay Area and
recently decided to join the more than 40 million people who are plugged into
online dating.
Online dating can be an easier route for
those who have trouble initiating conversation. For people with Autism Spectrum
Disorder, it’s an alternative to picking up people at bars or parties and
risking potential in-person rejection.
Garry Burge is 41, lives with his parents
in Brisbane, Australia, and was diagnosed with autism spectrum disorder in
1998.
Over the years, he’s tried dating sites
like the Canada-based LavaLife and Australia’s RSVP, but he found his most
recent long-term relationship on Facebook.
“In 2008, I met a female on the autism
spectrum in the United States,” Burge says. “That became sort of a long
distance relationship for a while, and that collapsed due to the immigration
difficulties.”
Despite having some success in online
dating, Burge isn’t optimistic about finding a partner.
“I’ve got to the stage where I just find
the whole concept of dating and relationships is just simply overwhelming,”
Burge says. “I don’t think there’s any future in that direction for me.”
Jeremy Hamburgh is a New York-based
dating coach for both neurotypical people and people with disabilities. He’s a
Hitch for those who can hardly flirt, and he spends hours hiding behind book
shelves and potted plants in bars and restaurants as his clients attempt to
initiate conversation, then offers feedback later. Hamburgh also leads
workshops at Adaptations, a program through the Manhattan Jewish Community
Center that teaches life skills to people with developmental disorders.
Hamburgh says that it’s part of his job
to introduce neurotypical people to the idea that people on the spectrum are
not as different as they may seem.
“One of the things that I work on with my
online dating clients is trying to break through the stigma of autism by
explaining what my client struggles with and what he or she is great at,”
Hamburgh says.
The social stigma of ASD is something
that Hussein and others grapple with regularly.
After a few hours of setting up his
dating profile, Hussein shuts his computer and gets ready for bed, leaving his
door slightly open. Even at 22, the dark still makes him anxious.
* * *
Hussein’s strict criteria becomes
apparent with each question he answers. “I don’t look for perfect-looking
girls, but I’m looking for a person who weighs the same as me and is not too
tall or too short,” he says. “I’m also looking for a girl who has good hygiene,
and nothing like fake nails or dentures.”
David Finch, author of the memoir The
Journal of Best Practices, says that this “my way or the highway” outlook on
life affected his own dating history. Finch was diagnosed with Asperger
Syndrome in 2008 by his wife, a speech therapist.
“I wasn’t born with the skills to be able
to go with the flow,” Finch says. “It’s important to know that those
differences are there.”
Wendy Katz, who works for a nonprofit in
Louisville, Kentucky, met her ex-husband online, and after her divorce eight
years later, she’s dating again. Diagnosed at 17, Katz has no problem being
social, but she says it’s a daily practice. Online dating, she says, helps her
get over her nerves.
“A lot of times people on the spectrum,
when they talk, either their face or their vocal tone is kind of wooden. I mean
I’ve worked hard on mine over the years,” Katz says. “When you meet someone
online, you’re not looking at them and you’re not hearing them, you might not
know that that person is different. It might give them more of a chance.”
When it comes to disclosing her
diagnosis, Katz says she’s not embarrassed to tell people.
“If people that are functioning pretty
well don’t out themselves then people are going to think none of us are
functioning very well,” Katz says. “I’m trying to not be shy about it.”
Hussein, though, has reservations about
mentioning his condition to his potential prospects.
“At the moment I don’t want to reveal
that I have Asperger’s because some people who are already on OkCupid will
think that ‘this person has a disability,’” he says.
But 23-year-old Leah Grantham took a
different approach on OkCupid, opening up about her autism from the outset.
“You can’t always tell if a person is autistic unless you start talking with
them; a lot of us are pretty stealth about it. But we can be a lot more honest
about it when we are doing online dating.”
She said she doesn't limit herself to
dating only on the spectrum, though.
“I kind of go through a cycle in my
dating life where I will want at one point to date people who are also autistic
and be very insistent that my partner is on the spectrum,” she says. “And other
times I take a step back and I say that I want to date somebody who’s not
autistic because I kind of enjoy explaining things.”
* * *
For many, having ASD is like wearing an
astronaut’s helmet. You can only get so close to people before you realize
you’re blocked by a thick layer of Plexiglass. ASD is more than just a
disorder; it’s a state of being permanently misunderstood.
“Many people with autism like rules,”
Hamburgh says. “It helps them order their day, it helps them order their
actions.”
Characteristics of ASD include repetitive
behaviors, communication difficulties like lack of eye contact, and
coordination problems. Some on the spectrum also lack a filter.
“The one thing I am concerned about is,”
Hussein says, “if I ask a girl something and the girl might get embarrassed.”
A few days pass before Hussein is back on
the site.
“I’m researching girls,” he says,
scrolling through rows and rows of women. Finally, he sends a message to a girl
who catches his eye.
“Hello, my name is Hussein.”
“How is life?”
All of Hussein’s messages say the same
thing. While they are friendly, they show little to no personalization, a
common pitfall when fishing for responses.
Hussein knows that because of his brutal
honesty, he is often unable to process why anyone else would be dishonest. But
building relationships online can be an important way for people on the
spectrum to build up to in-person relationships by getting to know someone
before anything progresses.
Throughout his online dating experience,
Hussein has worried about his lack of filter, trouble customizing interactions,
and anxiety about trusting the wrong people. Grantham, Burge, and Katz all
agree that when it comes to dating online, autistic and neurotypical people
alike face the same major hurdle: trusting someone else.
“When you think about autism in an
abstract way, autism is a problem of not seeing the unwritten rules of life. People
with autism don’t grasp the social cues, they don’t grasp the rules of
engagement that you and I pick up as we go through life,” Hamburgh says. “And
then when you think of online dating, online dating is its own world; it is its
own ecosystem, and it abides by its own set of rules and norms. So how can you
expect someone with autism who is already poor at picking up on rules to
succeed in a world that has a totally separate set of rules?”
While Hussein is slowly figuring out the
nuts and bolts of online dating, each day is a learning process. Each message
is a step in the right direction, not just for him, but for each person on the
spectrum looking for a companion.
“I am feeling pretty confident,” he says
with a wry smile. “I’ll just keep on trying.”
---
EDUCATION
Radio Gives Young DJs A Voice At Perkins
School For The Blind. WBUR (11/25)
Not to boast, but the Boston area is
pretty rich in radio. We have public stations, college stations, high school
stations — and also an Internet radio station at the Perkins School for the
Blind.
I visited with some Radio Perkins’ DJs in
their state-of-the-art studio in Watertown to find out how new technology is
empowering youth at the nation’s oldest school for the blind.
“I’ve been very into radio ever since I
was a little girl,” Carolyn Harrington said. The 17-year-old grew up in Easton,
Connecticut and recalled rocking out for hours in her bedroom while listening
to her favorite pop songs.
But these days Carolyn gets to introduce
music by Selena Gomez and One Direction while sitting behind a
professional-grade microphone.
“I’ve always wanted to be like on the
radio,” she admitted, “and now I am!”
Carolyn kicks off her hour-long, weekly
show with a whispery, but authoritative, pre-produced open. In it she lets the
world know, “This is Radio Perkins –with me, DJ Awesome!”
17 year-old Carolyn Harrington – a.k.a.
DJ Awesome – hosts Pop Hitz Mega Mix on Wednesday evenings. (Andrea Shea/WBUR)
17-year-old Carolyn Harrington – a.k.a.
DJ Awesome – hosts Pop Hitz Mega Mix on Wednesday evenings. (Andrea Shea/WBUR)
DJ Awesome is the teen’s “on-air” ID. She
came up with it herself. Carolyn was born without sight and carries a
distinctive vocal quality resulting from her premature birth.
“My show is the most popular show on
campus,” the young DJ said proudly, adding, “I mean, a few weeks ago I had 11
listeners — that has never happened to me before in my life!”
Carolyn hopes to increase her numbers for
“Pop Hitz Mega Mix.” Right now her biggest fans are Perkins students, alumni
and her parents. They call in with music requests, questions and comments. When
Carolyn first developed and piloted her show last year she remembers how hard
it was to hone in on topics for talk breaks. Then a teacher suggested she focus
each program by introducing timely themes.
On the day I observed, the young DJ
engaged in an on-air conversation with station manager Samuel Shaw. He asked if
Thanksgiving is one of Carolyn’s favorite holidays. She replied, “No, Christmas
is… the only thing I like about Thanksgiving is the Macy’s Thanksgiving Day
parade. That … and the food.”
The holiday banter continued until the
team was ready to hit play on the next song. Carolyn used voice commands to search
for music on her iPhone.
Shaw, who’s sighted, explained how
working with DJs who can’t see has been eye-opening because it’s dramatically
different than at your typical radio station. For instance, many of the 30 DJs
he oversees read scripts and Facebook comments via a device called a
refreshable braille note-taker. Shaw also explained how communicating while a
show is going out live can be tricky because in a usual broadcast situation –
where the goal is to make the listeners’ experiences seamless – directions and
cues are “said” through eye contact and hand signals.
“Yeah, so we have a lot more stuff that’s
done with social cues or conversation cues to keep the students moving,” Shaw
said, adding, “But that’s one of the challenges — figuring out how to say,
‘Wrap it up! In five minutes we’re done! We’re over the limit!”
Radio scripts for the blind and visually
impaired DJs are enlarged or read through a device called a refreshable braille
note-taker
Radio scripts for the blind and visually
impaired DJs are enlarged or read through a device called a refreshable braille
note-taker (Andrea Shea/WBUR)
Then there’s DJ Syrup and DJ Marvelous.
They co-host a music show that airs on Wednesday evenings. Recently, they
talked about their trip to the weight room at the nearby YMCA before pressing
play on some Bruno Mars.
DJ Marvelous’ real name is Campbell
Grousbeck. His father, Wycliffe, (Wyc) is a managing partner of the Boston
Celtics. The Grousbeck Family Foundation provided a $10 million dollar gift
that paved the way for the $28 million dollar Grousbeck Technology Center at
Perkins.
“Campbell was born blind, like many kids here
at Perkins actually,” Grousbeck said. “So it’s been a long journey for him to
find his way in the world.”
That’s why Grousbeck got behind building
the 17,000 square-foot center, which houses a music recording studio, assistive
technology training rooms, a student-run café and the radio station. He told me
his son Campbell speaks more clearly since becoming a DJ. And the 21 year-old
senior isn’t just listening to music passively anymore. Now he’s presenting it
and voicing his opinions.
“It just seemed to be such a natural
place for these kids to literally find their voice,” Grousbeck said. “And just
seeing our son as a DJ – he’s standing up taller. His name’s DJ Marvelous — I
mean does that say it all?”
“We’re not here to teach a whole bunch of
kids to be DJs,” said Dorinda Rife, superintendent of education programs at
Perkins.
“The kids have to plan, they have to
figure out the electronics. Some of our kids have increased their braille
reading speed by reading off of a script because it’s so motivating to do
that,” she said. “And it just makes them more responsible for something that is
going to be beyond their own world — which sometimes is very small for blind
people.”
Perkins is a private school that serves
blind and visually impaired kids who can’t be sufficiently educated in their
public school systems. Rife explained how the radio station, radio classes and
a radio club are part of a larger strategy to help sight-challenged youth grow
into confident, productive adults. She also believes adding “radio DJ” to a
resume increases these kids’ post-graduation capital.
“An employer can relate to that and say,
‘huh, this kid can do a lot,’ instead of, ‘oh my gosh, this kid is blind, what
do I do? I bet he can’t do anything at this job,” which Rife said is an
unfortunate reality with some employers.
Only a handful of schools for the blind
have radio stations, according to Rife, and she’s not surprised. Building a
facility that would accommodate the students’ needs, such as providing
wheelchair access, was no small task. And radio stations (like those at WBUR)
are full of buttons and faders and sound boards made for people who can see.
“It’s a fantastic console, it sounds
great — but it works on lights — so you can’t really see if you’re visually
impaired if something is on or off,” Matt Carlson said. He works for Berklee
College of Music, a partner in Radio Perkins. Carlson designed the studio and
adapted the equipment, including the console. Now it’s labeled in braille.
Carlson said he’s constantly putting
himself in the DJs’ shoes to improve their ability to navigate the studio’s
equipment.
“Sometimes when I’m trying something new
out I have to close my eyes and pretend like, ‘alright, if I can’t see how can
I make this easier?”
Carlson said at this point some Perkins’
kids have gotten so good that they can run the sound board and DJ at the same
time.
DJ Awesome (a.k.a. Carolyn) said she’s
proud to be part of the Radio Perkins posse.
“What we say is, ‘This is Radio Perkins —
possibility radio.”
Then, as we were wrapping up our
interview, the teen joked that getting on this radio station (meaning WBUR)
will help increase her listenership.
“And please do leave a comment on
Facebook, tweet on Twitter and all that,” Carolyn added, with a smile.
For more information on Radio Perkins, or
to listen to the shows, visit the Radio Perkins website.
---
HEALTH
Breaking Down Barriers: For the deaf, a
doctor who can communicate.
Pittsburgh Post-Gazette (11/25) By Tina
Calabro
Deborah Gilboa had an unconventional path
not only to becoming a family practice physician but also to becoming one of
the few doctors in the nation who is fluent in American Sign Language.
After completing a bachelor's degree in
theater at Carnegie Mellon University in 1992, the Chicago native took a job as
stage manager with Deaf West Theater in Los Angeles. It was a transformational
experience. Immersed in deaf culture, she was surprised at how frequently her
colleagues spoke about their difficulties communicating with doctors. As
someone considering medicine as a career, she paid close attention.
Upon returning to Pittsburgh to complete
prerequisites for admission to medical school, Dr. Gilboa became a certified
ASL interpreter. Throughout medical school at the University of Pittsburgh, she
gained valuable experience by interpreting in emergency rooms and other health
care settings. When she finished her degree, she joined the staff of the
Squirrel Hill Health Center, a federally funded agency whose mission is to
remove barriers to high quality health care, including communication barriers.
Patients who use the center, including many immigrants and refugees, speak
numerous languages, all of which are accommodated by bilingual staff or
interpreters.
"Deborah's ability in ASL made her
attractive to us," said Susan Friedberg Kalson, CEO of the center.
"She has such empathy for people who have overcome barriers to get health
care."
People who are deaf or hard-of-hearing
are said to be one of most underserved disability populations in terms of
health care. Lack of sign language interpretation is the most frequent subject
of Department of Justice cases regarding compliance with the Americans with
Disabilities Act in health care settings, according to the website ada.gov.
The ADA requires medical facilities to
provide "appropriate auxiliary aids and services when necessary to ensure
effective communication." Besides lawsuits, the negative consequences of
forgoing such accommodations can range from minor misunderstandings to
life-threatening situations.
Amid the call for greater compliance with
the law, awareness seems to be growing in the health care world. Interviews
with representatives of UPMC's Disabilities Resource Center and two hospitals
in the Allegheny Health Network (Allegheny General and Jefferson Regional)
revealed commitment to providing accommodations for inpatients and outpatients
through a combination of live interpreters, video remote interpreting,
assistive listening devices and ongoing staff training. An addition to UPMC
facilities is video relay phone service for inpatient use.
People who are deaf or hard of hearing
are estimated to be about 10 percent of the population, said Amy Hart, CEO of
the Center for Hearing and Deaf Services, the largest regional provider of
interpreters and related services. Of that 10 percent, about 6 percent are
"culturally deaf," meaning they use sign language as their first
language.
Over the past year, the center has
fulfilled 6,000 requests for interpreters in health care settings in 22
counties. Two-thirds of the requests came from hospitals; one-third from
private practices. According to Ms. Hart, the main barriers that keep health
care providers from using ASL interpreters seem to be not understanding the
obligation to do so under the law and resistance to the cost of interpreters,
which typically range from $40 to $60 per hour.
The center receives calls weekly from
patients who complain about difficulty in obtaining ASL interpretation in
health care. Some report that they are asked to bring their own interpreters,
use family or friends as interpreters, or choose other facilities that provide
ASL. In many cases, the patient acquiesces in order to maintain the
relationship with the doctor. But sign language interpretation is "not
just a convenience," said Ms. Hart. "It's a critical part of health
care."
Dr. Gilboa sees more than 100 patients
who are deaf and speaks nationally to physicians about understanding this
population. She says that using handwritten notes is not sufficient. "We
need to communicate in a way that is best for the patient, not for us."
At the same time, she says, hiring sign
language interpreters can be "a huge burden" on physicians.
"Many have to pay out of pocket. Insurance doesn't help at all. There's a
huge disincentive. It's not as simple as saying 'those poor people and those
mean doctors.' There's a real tension."
But the real bottom line is that
effective care is not possible without adequate communication, she says.
"When I see a new patient who is deaf, often the patient will express
health problems to me that they have never expressed before because of the
difficulty of communicating with doctors in the past. For example, they might not
know the results of tests."
Chris Noschese, a patient of Dr. Gilboa
and a leader in the deaf community, said that before choosing Dr. Gilboa as his
physician a few years ago, he frequently wrote notes back and forth with his
doctor during appointments. "It took so much time, and doctors are short
on time. With someone who knows ASL, I can express myself freely. I can ask a
question. We can really communicate."
Michelle Ruotolo, 33, of Penn Hills, who
delivered her first child a year ago at Magee-Womens Hospital of UPMC, said it
was an outstanding experience because she was provided with a sign language
interpreter at every prenatal visit and during the delivery. "When you're
giving birth, nurses and other people are coming and going all the time. How
would I know what was going on without an interpreter?"
The use of video remote interpreting,
which involves video conferencing with a sign language interpreter during a
medical visit, is growing rapidly. "It's immediately available and for
quick procedures, like blood draws, it can be cheaper than an
interpreter," said Ms. Hart. "It can also work well as a bridge to a
live interpreter."
She noted, however, that many in the deaf
community oppose its use in medical settings. "It doesn't give nearly the
information that a live interpreter can."
Dr. Gilboa continues to advocate for
optimal communication between doctors and deaf patients. "The deaf
community puts up with uncertainty about their health care that leaves them
poorer for it, and I don't mean financially," she said. "As doctors,
we want to know what's really going on. The deaf community's expectations of
doctors is very low. We need to raise those expectations."
Health care resources for people who are
deaf and hard of hearing:
■ Pennsylvania Office for Deaf and Hard
of Hearing (www.dli.state.pa.us/odhh) provides information and advocates for
accessibility.
■ HealthBridges
(http://healthbridges.info) provides resources for people who are deaf or hard
of hearing and helps health care providers understand accommodations and
disability rights.
■ The City of Pittsburgh/Allegheny County
Task Force on Disabilities has a publication on hospital compliance guidelines
for people who are deaf, deaf-blind or hard of hearing: www.pittsburghpa.gov/dcp/files/ada/11_ADA_Hospital_Compliance_Guidelines.pdf
Resources for people who are deaf and
hard of hearing
■ Pennsylvania Office for Deaf and Hard
of Hearing (www.dli.state.pa.us/odhh) provides information and advocates for
accessibility.
■ HealthBridges
(http://healthbridges.info) provides resources for people who are deaf or hard
of hearing and helps health care providers understand accommodations and
disability rights.
■ The City of Pittsburgh/Allegheny County
Task Force on Disabilities has a publication on hospital compliance guidelines
for people who are deaf, deaf-blind or hard of hearing: www.pittsburghpa.gov/dcp/files/ada/11_ADA_Hospital_Compliance_Guidelines.pdf
---
SPORTS
Paralympics boosts profile of people with
disabilities but no panacea. Chicago Tribune (11/25)
Jack Merlin Watling, Reuters
LONDON (Reuters) - Walking with
Paralympic Gold Medalist Tim Prendergast along one of London's busiest streets,
'disability' is not the first word that springs to mind.
Weaving through the heaving crowds
outside Baker Street underground train station, Prendergast, who is blind
except for peripheral vision, crosses a road without pause - exhibiting the
focused confidence that led him to victory in the T13 800m in Athens in 2004
with a time of 1:56.23.
"People make assumptions. In fact,
some people will grab your arm and move you around," said Prendergast, who
says he never uses a cane. "They have good intentions, so you can't get cross,
but it's patronizing."
The 2012 London Paralympics, with an
estimated international television audience of 3.4 billion, raised awareness of
disabilities and turned some competitors into heroes and heroines. But it was
no panacea for the often fraught social interactions that people like Prendergast
face on a daily basis.
"Research clearly shows that the
games had a positive impact on peoples' perceptions of disability," said
Craig Spence, head of communications at the International Paralympics
Committee.
"(But) there is still a significant
challenge... in bridging the gap between peoples' perception of disabled
athletes and their attitudes to disabled people in everyday life.
"That requires seeing disabled
people excel in the work place and in the community. The Games started a
dialogue but it is now up to society to carry that legacy forward."
The assumptions that people sometimes
make about disabled people can be insulting, inconvenient or even dangerous.
"As a wheelchair user there is
always the danger that someone will grab your chair and take you across a road
that you had no intention of crossing," said Rosemary Frazer, Community
Campaigns Manager at the disability charity Scope.
"WHY DO YOUR EYES WOBBLE?"
Frazer is particularly incensed when she
travels with her husband and staff and other passengers at airports treat her
as if she were mentally impaired - or not even there.
"They act as though you could not
possibly explain yourself and it is very condescending. I get this when I go to
the airport and try to book in. I give them our tickets and they ask my husband
what help I will need to get on the plane," she said.
Being visually impaired myself, I have
often experienced people doing things for me while being afraid to ask
questions.
This can result in them being very
unhelpful. Children on the other hand will just walk up and say 'why do your
eyes wobble?' I explain and they walk away satisfied. Although this often
leaves very embarrassed parents, it is in fact refreshing.
Prendergast lost his sight over a
five-year period when he was a teenager. It started with dark spots that formed
in the centre of his eyes and slowly expanded until they blotted out everything
but his extreme peripheral vision.
"I got angry. My passion was cricket
and I was not going to be able to take it very far. But it was either sit
around and feel sorry for myself or work out how to deal with it. You have to
adapt," Prendergast told Reuters.
His disability has forced him to come up
with a wide array of tools and techniques for dealing with everyday problems.
For example, crossing a road, he uses
other pedestrians as markers, locking onto their heels with his peripheral
vision and following them to avoid bollards and shop signs.
At a train station early in the morning,
before the loud speaker announcements begin, he will ask others for help.
"It is easy to feel in denial about
your disability and some people find it hard to ask for help, but really asking
for help is the greatest source of independence. I have never been refused when
I explain to someone that I cannot see," he said.
DIALOGUE ESSENTIAL
Helena Lucas, another Paralympic Gold
Medalist, agreed.
"Being open about when you need help
is vital. You have to be comfortable with yourself," said Lucas, who won
her medal in 2012 for sailing despite having no thumbs and limited movement in
her arms. She sails with no major modifications to her vessel, a 2.4m R
Olympics-class sailboat.
The importance of actually asking disabled
people what they want is by no means confined to crossing the road.
For example, if a blind person enters the
education system it might seem best to teach him Braille. Yet the Royal
National Institute for Blind People estimates there are only about 20,000
Braille users in Britain, representing less than one percent of blind and
visually impaired people in the country.
While many will not have had the chance
to learn Braille, many others will choose not to use it, even if they have
learned it, because it is not appropriate for their needs.
Norali Yusop lost his sight to meningitis
while preparing for school examinations. Living in Brunei, he was urged to
learn Braille but quickly found he needed "something more efficient".
Besides, Braille textbooks were hard to
come by, so he took to recording his classmates reading their books out loud.
As the amount of reading increased this
became impractical and he started to use e-books with a screen reader to listen
to his work. Though "tedious", this paid off and in 2007 he became
the first blind graduate of University Brunei Darussalam.
Disabled people say open, honest, two-way
communication is vital if they are to become fully integrated into society and
to be seen as people who happen to have a disability rather than as 'disabled
people'.
For Prendergast the distinction is clear.
"I don't consider myself to be disabled. I am an athlete, a New Zealander,
now I am a father, and I am visually impaired," he said.
(Editing by Michael Roddy and Gareth
Jones)
Copyright © 2013, Reuters
---
Aaron 'Wheelz' Fotheringham, Wheelchair
Freestyler, Is Defying The Odds.. And Gravity (VIDEO). The Huffington Post
(11/21)
When Aaron "Wheelz"
Fotheringham misses a landing and crashes, he asks himself one question:
"Is this wheel life?"
The 21-year-old wheelchair motocross athlete
has quite a sense of humor, which he showcases perfectly in the extreme video
above.
Fotheringham, from Las Vegas, was born
with spina bifida, according to his website. But he's never let his condition
slow him down.
He's competed in BMX freestyle events,
and he's also one of the star athletes at the action sports show Nitro Circus
Live. He thrills fans with his double backflip, a move that he was the first to
pull off amongst wheelchair athletes, according to the Telegraph.
"Aaron has a passion for what he
does -- not only is it fun, but he wants to change the world's perception of
people in wheelchairs," his website states, "as well as helping
everyone see his/her own challenges in a new way."
---
RESEARCH/STUDIES
Cardiff University addiction brain
'retraining' study. BBC News (11/25)
Scientists are investigating whether
people with alcohol addiction, eating disorders and post-traumatic stress can
retrain the way their brains work.
They will look at whether neurofeedback -
a technique showing people positive imagery - can help combat mental and
behavioural disorders.
People with depression and Parkinson's
disease have already improved their symptoms in this way.
Cardiff University is leading the
four-year study.
The university has previously carried out
research in the area using MRI scanners to show eight people how their brains
reacted to positive imagery. Researchers are currently evaluating the results.
'Improve their symptoms'
"Using an MRI scanner, neurofeedback
allows scientists to monitor brain activity of patients in real time,"
said Prof David Linden, of the school of psychology, who will co-ordinate the
European Commission-funded Braintrain consortium.
"The activity levels are then fed
back to the patient in the form of a simple display on a screen.
"Using the feedback, it allows
patients to see and alter activity in specific parts of their brain.
"Previous studies have already
suggested that this technique might help people with depression and Parkinson's
disease improve their symptoms."
The research will involve some of the
world's best scientists in the field and they hope it will lead to the training
of patients in being able to regulate their own brain activity.
"We want to establish whether it can
help restore function, improve symptoms and promote resilience," added
Prof Linden.
"Ultimately, we hope to establish
whether this new technique could become part of comprehensive treatment
programmes for these conditions."
Much of the research will be undertaken
at Cardiff University's Brain Imaging Research Centre (Cubric) using MRI
scanners.
Beer and wine
Fellow psychologist Dr Niklas Ihssen said
clinical trials would be dealing with the question of whether neurofeedback
could help those with alcohol addiction.
People taking part in the trial will be
shown images of beer and wine, with researchers trying to find an area of the
brain which is engaging in processing the pictures.
Dr Ihssen said they would show the
participants how they respond by using symbolic feedback.
He said it was self-guided training
"like trying to control your heart rate".
"We hope the technique is transferrable
to everyday life," he added.
Neuroscientists, physicists,
psychiatrists and computer scientists from the Netherlands, France, Portugal,
Germany, Israel and the UK will be involved.
The Braintrain consortium is meeting for
the first time in Cardiff this month.
---
Tadpole brains studied to help understand
Parkinson's. BBC News (11/24)
Computer models of tadpoles' brains are
being developed as part of a £1.3m project to understand how the brain makes
the decision to move.
Researchers say it could lead to a better
understanding of what happens in the brains of people suffering from diseases
like Parkinson's.
They chose to study tadpoles, due to a
detailed knowledge about the creatures' nerve cells controlling swimming.
Plymouth University is working with
biologists in Bristol and St Andrews.
The computer models will show how sensory
signals are interpreted by the brain and lead to the initiation movement.
Scientists from the university said while
the response in most animals to walk, run, swim or fly away can seem very
simple compared to our ability to think, talk or learn, the details of the way
nervous circuits in the brain operate with spinal cords to initiate movement is
still poorly understood.
To simplify the problem, researchers
chose the "very small" newly-hatched frog tadpole, where they have
detailed knowledge about the nerve cells controlling swimming.
It is hoped that the research will
provide broader insights into how brain networks controlling locomotion are
organised.
In the brain of mammals, like humans,
when these networks go wrong, they can cause severe problems with movement,
like in Parkinsonism, where people can find that their movements become slower.
The three-year project is funded by the
Biotechnology and Biological Sciences Research Council (BBSRC).
---
Parkinson's disease
Parkinson's is a progressive neurological
condition caused by a deficiency of dopamine
Named after Dr James Parkinson, a
physician who published An Essay on the Shaking Palsy in 1817
The main symptoms are tremor, rigidity
and slowness of movement
Drugs, therapies and occasionally surgery
can help to control symptoms, but only for limited time periods
There is currently no cure for
Parkinson's and it is not clear why some people get it and others do not
---
More Than 1 In 10 Kids Diagnosed With
ADHD. Disability Scoop (11/25) by Shaun Heasley
The number of American children with
attention deficit hyperactivity disorder is on the rise, according to new data
from the U.S. Centers for Disease Control and Prevention.
More than 1 in 10 kids ages 4 to 17 has
been diagnosed with ADHD and an increasing number of them are taking medication
to address their symptoms, the CDC said.
The findings released Friday come from a
survey of over 95,000 parents, which was conducted in 2011.
The agency found that about 11 percent of
kids — or roughly 6.4 million — had been given a diagnosis of ADHD, which is
characterized by difficulty paying attention or controlling impulsive
behaviors.
By contrast, a similar survey put the
number of children diagnosed with the condition at 9.5 percent in 2007 and 7.8
percent in 2003.
ADHD is more common among boys than
girls, according to the latest CDC findings which were published online in the
Journal of the American Academy of Child and Adolescent Psychiatry.
Of those with a current diagnosis, more
than two-thirds were taking medication for the condition, the survey found.
It’s unclear if the increasing prevalence
of ADHD is due to an actual uptick in cases or better recognition of the
condition, CDC officials said.
ADHD is among the most common chronic
conditions affecting children. A recent study found that almost one-third of children
with autism also have ADHD.
---
Original study: here
http://jaacap.org/webfiles/images/journals/jaac/visser.pdf
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