Doctors with Blindness and Vision Loss Break Attitudinal Barriers

Dr. Jeffrey Gazzara, DO, is a resident in neuromusculoskeletal medicine at Mercy Health Muskegon in Muskegon, Mich. According to an article in DO, from the American Osteopathic Association, Dr. Gazzara is legally blind.

A three-dimensional white figure wears glasses, walks with a white cane, and has a yellow arm band with three black dots.
What preconceptions do you have about what a person who is blind or has low vision can or can’t do? Do you believe they can be doctors? If you don’t believe they can, are you basing that on your experience with sight, or on your experience with blindness?

Dr. Jeffery Gazzara, DO

As with doctors with blindness before him, Dr. Gazzara says that treating the patient is easiest. Adapting to existing medical systems is more difficult for a doctor with vision loss.

“During my clinical years,” he said, “I was rotating in a different hospital every month. That was difficult because I use a special computer system and I had to reconfigure it to access each hospital’s electronic medical record system.”

Dr. Jacob Bolotin

Dr. Gazzara is among other doctors influenced by the success of Dr. Jacob Bolotin, who became the world’s first fully licensed medical doctor, and who was blind since birth.

this picture is a graphic of two hands forming a heart and showing a heart beat pattern. The heart also makes multiple hearts as a representation of beats.
Together with captions for pictures, Sign Shares’ blog posts include Alternate Text for people who use screen readers. That way, they will know that this picture is a graphic of two hands forming a heart and showing a heart beat pattern. Photo credit: geralt, pixabay

According to a National Federation of the Blind article, Dr. Jacob Bolotin “fought prejudice and misconceptions about the capabilities of blind people in order to win acceptance to medical school and then into the medical profession. He was one of the most respected physicians in Chicago in the early twentieth century, particularly well known for his expertise on diseases of the heart and lungs.”

Commenting in 1914 on Dr. Bolotin’s accomplishments, the Philadelphia Inquirer observed, “It is one of the most amazing instances of mind triumphant over physical handicaps that the world has ever known… [Dr. Bolotin] will rank with Helen Keller as one of the wonderful blind persons of history.”

Dr. David Hartman

According to a Gettysburg College article, Dr. David Hartman, a psychiatrist and author, was the first blind person to complete medical school in the U.S.

Dr. Hartman lost his sight at age 8 to glaucoma, according to the article. Though he earned a bachelor’s degree with highest honors and distinction, he was rejected by nine medical schools.

Dr. Hartman wrote a story of his medical experiences, White Coat, White Cane: The Extraordinary Odyssey of a Blind Physician, which was published in 1978, and is the subject of a television movie, Journey from Darkness.

Dr. Timothy Cordes, MD

Dr. Timothy Cordes, MD, has progressive vision loss and is on staff at William S. Middleton Memorial Veterans Hospital in Madison, Wis.

Dr. Cordes is a psychiatrist who specializes in Addictive Behaviors.

According to an article in The Braille Monitor, Dr. Cordes  interviewed at a residency in the northeast. His interviewer asked, “You know, I just don’t get it. How are you going to know what’s going on with a patient?”

He said, “Well I know you’re reading your email right now as you are talking to me.” Dr. Cordes attributed his sense of humor to part of his success.

Graphic shows a three dimensional model of the bones of the lower part of the spine, hips, and pelvis.
Anatomical models are one of many tools people with low vision or blindness can use during medical education.

Dr. Cordes did things many people with sight might find extraordinary, such as operating: “I scrubbed in, holding that retractor for hours on end. I reached into live people’s bellies and identified organs and blood vessels. I caught babies. In pediatrics I examined kids. One of the children’s parents was a guy I knew. He said, after they finished the exam and walked out, his son said, ‘That was fine, Dad, but who was the dog for?'”

For an Eyeway.org article, Dr. Cordes was asked if there were people who were skeptical about his wanting to study Medicine.

He said, “Everybody but the University of Wisconsin! All the other places just said, ‘No, thanks.'”

According to an NBC News report, “In a world where skeptics always seem to be saying, stop, this isn’t something a blind person should be doing, it was one more barrier overcome. There are only a handful of blind doctors in this country. But Cordes makes it clear he could not have joined this elite club alone. ‘I signed on with a bunch of real team players who decided that things are only impossible until they’re done,’ he says.”

Sign Shares Logo of hands and slogan, Interpreting Your WorldAt Sign Shares, we believe in exploring our potential and horizons and not putting limitations on what a person can do.

If you’re a person who is Deaf-Blind and you need interpretive services to make your dreams a reality, have your college or business contact us here to learn more!

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Adapting to Usher Syndrome and Deafblindness

Molly Watt is a young speaker, vlogger, and author who is Deaf-Blind and advocates for people who have Usher Syndrome, the condition she has. Watt has created an awareness video about the syndrome, as well as an open-captioned vlog about technology she uses daily to assist her with both hearing and vision loss that comes from having Usher Syndrome.

Young woman walks down street using a guide dog. Words at bottom of slide "and the worst case scenario for any deaf person is to lose their sight"
Molly Watt describes how Usher Syndrome is a worst case scenario for someone with hearing loss in one of her awareness videos. http://www.mollywatt.com/keynote-speaking

According to the National Institute on Deafness and Other Communication Disorders, Usher Syndrome is a genetic disease or disorder that affects both hearing and vision and is one of the leading causes of deaf-blindness.

Symptoms of the syndrome include:

  • deafness or hearing loss,
  • balance problems,
  • retinitis pigmentosa, which causes night-blindness, and
  • a loss of peripheral vision (side vision) through the progressive degeneration of the retina.
Screen shot from a video showing tunnel vision and the words Steps can be quite disorientating.
Molly Watt portrays the tunnel vision she has in an awareness video. https://www.youtube.com/watch?v=Hq6rRQTIoqM

Retinitis pigmentosa eventually causes “tunnel vision,” where a person can only see straight ahead.

There are three types of Usher Syndrome, ranging from Type 1, where children are born profoundly deaf, have problems with balance, and eventually become legally blind, to Type 3, where children may have normal hearing at birth, and gradually lose hearing, vision, and balance.

Picture of cell phone with message that it's connecting to hearing devices. At the bottom fo the slide text asks how she hears music if she can't hear and the response is Hearing Aids-duh!
Watts wears hearing aids that she pairs with her cell phone. The direct connection between her cell phone and hearing aids provides better quality sound. She also pairs her hearing aids with a smart watch. https://www.youtube.com/watch?v=_-yrqbaN1II

According to the institute, early diagnosis of Usher syndrome is important so parents can enroll their children in training programs to manage hearing and vision loss.

Frame from a vlog that shows a black guide dog and says "Occupation: guide dog for the blind my mobility aid."
Molly Watt’s vlogs often include her guide dog, which is a vital tool for her independence. https://www.youtube.com/watch?v=_-yrqbaN1II

Typically, treatment will include:

  • hearing aids,
  • assistive listening devices,
  • cochlear implants,
  • communication methods such as American Sign Language;
  • orientation and mobility training;
  • communication services; and
  • independent-living training that may include Braille instruction, low-vision services, or auditory training.

Sign language can be a vital tool for communication for people who have advanced Usher Syndrome, since people without hearing or sight may choose to communicate using Deaf-Blind Tactile with an interpreter. This process allows the person with deafblindness to feel the interpreter’s hands as they sign.

Sign Shares, Inc./International provides services for people who are Deaf-Blind, Deaf, and Hard of Hearing, as well as for people who are Foreign Language Hearing.

You may book an interpreter with Sign Shares using this link.

Download the fact sheet on Usher Syndrome at this link.

Learn more about Molly Watt and her mission to educate others about Usher Syndrome at http://www.mollywatt.com/.

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UPDATED: Celebrating and Sharing Deaf Awareness Month with Celebrities and Events

September is Deaf Awareness Month, but it’s a reminder that we should make awareness about hearing loss and deafness year-long.

Sun shines brightly on a couple walking down the street holding hands.
September celebrates Deaf Awareness Month and the beginning of fall. photo credit: Into Autumn via photopin (license)

People who have deafness or hearing loss and work in the entertainment industry have advocated for more awareness about D/deaf issues.

“Seriously, I don’t find not being able to hear an obstacle or a boundary. For me and for many of us, it is an advantage and it’s a part of my identity in fact. It’s a huge part of who I am.”–Nyle DiMarco

“We really get to prove that the old saying is true — the only thing a deaf person can’t do is hear. I love that we show how diverse the deaf community is and how uniquely individual hearing loss is.”–Katie LeClerc

Marlee Matlin smiles and opens her arms wide.
Academy Award-winning actress Marlee Matlin when she got her Hollywood Star.

“The opportunity to communicate in sign language, one of the most beautiful languages in the world, is an advantage that deaf people enjoy.  It’s a language that combines several elements at once with a simple hand movement and facial expression: meaning, affect, time and duration. It’s just so beautiful that printed or spoken words can’t begin to describe it.” —Marlee Matlin

Lou Ferrigno flexes his bicep for a fan.
Before he was TV’s The Incredible Hulk, Lou Ferrigno won Mr. Universe and Mr. America bodybuilding titles. photo credit: Ferrigno via photopin (license)

“If I hadn’t lost my hearing, I wouldn’t be where I am now. It forced me to maximize my own potential. I have to be better than the average person to succeed.” —Lou Ferrigno

To celebrate Deaf Awareness Month 2016, here is a list of upcoming 2016-17 events for people who are D/deaf, their friends and family members, or for professionals who provide services for them.

If we’ve left anything out, please let us know in the comments below and we can add it.

Deaf Events 2016

Houston Focus Group on Deaf Discrimination and Disability Rights
UPDATe: Tuesday, Sept. 27, 2016
Houston, TX
Under the sponsorship of The Capsule Group, the focus group will meet at MMSC (Metropolitan Multi-Service Center) located at 1475 West Grey Street, Houston, TX 77019, from 10 a.m. -1 p.m.

Deaf Celebration EXPO 2016
Sept. 24, 2016
Fort Worth, TX
Sign Shares, Inc. is one the event’s 55 exhibitors.
Steve C. Baldwin, Deaf author, will be selling his murder mystery book there: “Backspace.”

Texas Association of the Deaf (TAD) Symposium
Oct. 1, 2016
New Braunfels, TX

The Houston Interpreters and Translators Association’s interpreter training: Consecutive Interpretation and Code of Ethics on Saturday, Oct. 1, 2016. The training will be provided during morning and evening hour sessions. It is approved for 8 hours of ATA; and is pending approval for: JBCC, ATA, CCHI and IMIA. The event includes 2 hours of ethics.
Houston, TX
The trainer will be Virginia Valencia, a federally-certified court interpreter.

International Language Services Conference
Oct. 12, 2016
Houston, TX
“The 5th annual International Language Services Conference will explore a 360° view of the interpreting encounter from start to finish, unifying all stakeholders in the process from the LEP patient to the hospital administrators, interpreter certifying organizations and educators, and  compliance officials.”

Association for Machine Translation in the Americas
Oct. 28-Nov. 1, 2016
Austin, TX

American Translators Conference
(“the voice of interpreters and translators”)
Nov. 2-5, 2016
San Francisco, CA

Deaf Events 2017

Texas Transition Conference
Feb. 22-24
Houston, TX

Texas Speech-Language-Hearing Association’s (TSHA) Annual Convention and Exhibition
Feb. 23-25, 2017
Austin, TX

Deaf Seniors of America (DSA) Houston National Conference
Sunday, April 2-Sunday, April 9, 2017

Forging Pathways to Health Care and Biomedical Science Careers, Association of Medical Professionals with Hearing Loss
Rochester, NY
June 9-11, 2017
The event’s hosted by the National Technical Institute for the Deaf at Rochester Institute of Technology.

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Houston Deaf Rally Educates Community about the Need for Live Interpreters

Thursday, Aug. 18, despite thunderstorms, a group of advocates who are Deaf or Hard of Hearing stood up at the Houston City Hall for their right to have preference given to their choice of accommodation at their doctor’s offices or hospitals.

People all wearing white NO VRI, Video Remote Interpreters T-shirts, hold rally signs saying NO VRI.
Houston advocates represented the Deaf Community at City Hall.

Despite recent law revisions, the Deaf community braces for the education needed to ensure that a person who is Deaf, Hard of Hearing, or Deaf-Blind will receive the accommodation of their choice at appointments with their health care providers.

KPFT’s Local News Reporter, Jacob Santillan, covered the event. Listen to the broadcast here or read the broadcast transcript here below the mp3 recording.

Many doctors and hospitals protest paying for live interpreters and in many cases now, people who are Deaf are provided with Video Remote Interpreters, or VRI, without regard to their specific need for accommodation.

The resistance from doctors, hospitals, and clinics to providing interpreters has been nationwide, as evidenced by cases taken up by the U.S. Department of Justice across America as part of the Barrier-Free Healthcare Initiative.

Recent changes involve health care providers adopting Video Remote Interpreting programs to save money instead of asking patients from the Deaf community what they need.

Communication problems addressed by some of the above legal cases would make some health care providers wonder if they would save money after all, if remote interpreting services fail due to technical errors or the physical limitations of having an interpreter over a small screen with a small voice.

A woman signs to a group of people.
Advocates gather around as Dr. Angela Trahan signs. A sign language interpreter voices for people who are hearing.

At the rally, Deaf advocate Robert Yost pointed to a flaw in the Americans with Disabilities Act as the source of problems people who are Deaf have when requesting interpreters for health care.

“Once the law was being passed, it was done by the business community that made an influence on Congress people to vote and put that one word in there that says ‘Reasonable Accommodation’ and that one word is realized that businesses, doctors, medical centers, police departments, everywhere, to have a right to do the cheapest way to interpret for Deaf people,” Yost said, according to the KPFT report.

Other advocates stressed their choice to have their preference of accommodation met.

Man signs to a group of people, some filming him.
Advocate Dana Mallory signs his views.

Advocate Dana Mallory signed, according to the report, “So I am here to recognize the problems we are noticing here in the Deaf community, preferring to have in an emergency situation a live person rather than a video remote interpreter. To meet their goals, we as Deaf would prefer to have a live person. We want to be able to have the choice.”

Having news radio coverage wasn’t lost on Sign Shares’ CEO and Capsule’s Founder, Eva Storey. “This is unique. I love the fact that we get the hearing world especially public radio coming in here, because the only way to get and make effective for the Deaf community is going to the hearing world, and mainstreaming them and with education. It’s three words we use: Advocate, Educate, and Legislate, and that’s all we are here to do.”

Learn more about the event at Capsule Facebook page. Like our page and stay informed!

Capsule: For the Love of Advocacy!

Sharing contributions with the world & future generations, one Capsule at a time! 

On August 16, 2016, Sign Shares, Inc./International announced the website publication of a new business on Facebook:The Capsule Group, known as Capsule. “We are proud to announce our advocacy group’s website is now live!!! Right before the August 18th rally at Houston, City Hall, well that just gives us goosebumps!”

Man uses sign language for interpreter and captions read: "My friends said 'VRI Deny. We choose a live interpreter.' That's a great idea."
Deaf Advocate Robert Yost signs about the right to choose a live interpreter.

The Aug. 18 Houston rally is a consumer-demanded event to address the Deaf Community’s response to the increasing use of Video Remote Interpreting, or VRI, at medical appointments without asking people who are Deaf or Hard of Hearing about their preference.

At focus group meetings, advocates who are Deaf and Hard of Hearing urged Capsule and Sign Shares’ staff to help them make a stand for their civil rights.

The rally is just one of Capsule’s time capsules–“sharing contributions with the world & future generations.”

Eva Storey picture: a woman with dark hair smiles.
Detective: Eva Storey, Founder of Capsule.

According to the Founder of Capsule, Detective: Eva Storey on Facebook, “Our late founder asked me one day to bring my passions for all disabilities forward and collaborate my love for advocacy. This includes a main focus on the Deaf & Hard of Hearing communities from local, statewide, to international. It is far time for a different way to advocate, educate & legislate beyond the scope of interpretation and with flexible, creative freedoms.”

Storey has a disability herself, which informs her about the needs for a better way of supporting others with additional needs. “I myself am a five-time stroke survivor with an auto-immune deficiency, but I don’t go around introducing my disabilities. I introduce myself, raw & real. ‘Hi, my name is Detective: Eva Storey, founder of The Capsule Group.'”

Capsule’s mission is “to advocate, educate, and legislate on behalf of people of all disabilities to have unlimited access to resources and support needed to achieve life!”

According to Capsule’s website, the business exists “For the Love of Advocacy! A Different way to Donate! Advocate, Educate, Legislate!”

By creating Capsule, Storey became the first Capsuler. Meet the rest of the Capsule team.

Register to Join Capsule and begin making your own capsule here.

Fill Your Capsule With Love. Launch.

Follow Your Capsule. It Will Be Loved.

Click here if you would you like to create your own capsule by donating the following for a person with a disability:

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For the Love of Advocacy, Follow Capsule on Facebook.

 

 

 

Deaf Hawaiian Battles to Save State’s Native Sign Language

Almost as soon as its documented discovery in 2013, Hawaii Sign Language was on its way to extinction.

Linda Lambrecht, a career American Sign Language teacher and past president of the Aloha State Association of the Deaf, is documenting Hawaii Sign Language, or HSL, while its few remaining native signers are still living. She’s one of them.

She hopes they can teach HSL to Hawaiians to preserve it as something that belongs to the Hawaiian Deaf community’s history.

Not long ago, Hawaii faced losing it's native spoken tongue. Now, experts are focused on saving its signed one. photo credit: Cliffs on Molokai Northern Coastline James Brennan Hawaii (27) via photopin (license)
Not long ago, Hawaii faced losing it’s native spoken tongue. Now, experts are focused on saving its signed one. photo credit: Cliffs on Molokai Northern Coastline James Brennan Hawaii (27) via photopin (license)

Lambrecht learned HSL from her older brothers, who are Deaf. According to an article in Hawaii News Today, “‘It wasn’t formal instruction, it was just exposure and that’s what we used to communicate,’ signed Lambrecht, who is also an ASL instructor at Kapi’olani Community College. ‘When foreigners came here and taught American Sign Language it was quite confusing.’”

She presented Hawaii Sign Language to the world at an endangered language conference and stunned the community because a new language hadn’t been discovered in America in decades.

According to the Ethnologue website, which documents the world’s languages, HSL is listed as “nearly extinct,” used by “elderly only.”

Surfer surfing a giant Hawaiian ocean wave.
Will Hawaiians surf this next wave to save a native language? photo credit: Eddie Aikau Big Wave Invitational Surf Contest Waimea Bay Hawaii Febrary 2016 via photopin (license)

Many Hawaiians who are Deaf don’t support HSL.

The results of the battle within the Hawaiian Deaf community about the value of its native sign language versus the more common and powerful American Sign Language will determine whether Hawaiians keep or abandon their unique sign language and its history.

HSL is distinct from American Sign Language. 80 percent of HSL has different vocabulary. Words such as “mother,” “father,” “pig,” and “small” have signs that differ from those of American Sign Language, according to an article in The Guardian.

See examples of HSL compared to ASL here.

Two things led Hawaiians who are Deaf to desert their native sign.

Pictures of a woman's lips while talking.
Some past and present efforts with Deaf education focus on how they can learn to speak, not sign. photo credit: 160318-N-IU636-154 via photopin (license)

The first was the establishment of a Deaf school, which promoted speaking over signing, according to The Guardian article. “‘The turning point, the beginning of the end of HSL,’ according to Barbara Earth [one of Lambrecht’s students], was the founding of Hawaii’s deaf school in 1914. Like most schools at the time, it promoted oralism, the system of lip-reading and speaking that is almost universally despised in Deaf communities for being painful, unnatural and ineffective.’”

When Hawaiians left the islands to become U.S. mainland soldiers, other Hawaiians also left, causing widespread changes, including the loss of HSL. photo credit: 160318-N-IU636-154 via photopin (license)
When Hawaiians left the islands to become U.S. mainland soldiers, other Hawaiians also left, causing widespread changes, including the loss of HSL. photo credit: 160318-N-IU636-154 via photopin (license)

The second language-killing event was Hawaiian military participation during World War II. While soldiers trained on the U.S. mainland, more Hawaiians moved to mainland states to attend college. Since most Americans who were Deaf used American Sign Language, Hawaii’s Deaf community used it too.

ASL became associated with success, education, and even “whiteness.” According to The Guardian article, “‘Deaf people here would put themselves into an inferior category compared to the people who brought ASL. People said, ‘They’re from America, they’re white people, they know better.’”

“…The forward march of ASL, which in certain ways brings people together, also poses a significant danger to many of the estimated 400 sign languages used all over the world – most of which we know nothing about,” according to The Guardian article.

Picture card showing sign language
How many ways are there to sign? Apparently, less and less with the widespread use of American Sign Language. photo credit: Positive signs via photopin (license)

Few Hawaiians sign now in HSL. Some who know it well prefer ASL instead of the native sign language they know that dates back to at least the 1820’s.

For a pilot study conducted by the University of Hawaii and created through the efforts of Linda Lambrecht and her former student, Barbara Earth—researchers located 19 people who were older and two children of Deaf adults who knew fluent HSL, according to the article.

Mildred was one of the most fluent HSL “masters,” but she preferred ASL. According to the article, Linda Lambrecht said, “‘I remember Mildred would always tell me, ‘I don’t like HSL, I like ASL, it’s for educated people like me.

However, when Mildred had a bad fall and was placed into hospice care, she reverted to using HSL, according to the article. “‘Linda visited her recently: “I saw her signing – and I noticed that she had reverted to HSL.’”

Whether anyone will translate HSL in the future depends on the Hawaiian Deaf community.

According to a Hawaii News Report, “”What we need to do is make sure that we have a good grammatical description of the language, make sure that we have a lot of data, then we need to train the deaf adults who use the language to teach it to other deaf and hearing people—and especially to expose children to it,” said James Woodward, an Adjunct Professor of Linguistics at the University of Hawaii at Manoa who helps document HSL.

Learn more about the history of HSL and attempts to preserve and teach it.

See the most popular HSL signs.

Sign Shares will be at Houston Abilities Expo this August

Sign Shares boat logo with blue handsCapsule Group logo with black background and white word Capsule and confetti streaming from word.Sign Shares, Inc. and Capsule will be at Houston’s Abilities Expo, Aug. 5-7 at booth 625, next door to the Houston Center for Independent Living’s booth, 627.

Sign Shares is the event’s American Sign Language interpreter sponsor.

According to their website, the three-day Abilities Expo is the nation’s leading disability event. Admission is free. The event has exhibitors, workshops, and day-long events.

The Houston Abilities Expo has 133 exhibitors listed, including businesses and organizations that support independence, awareness, and advocacy for people of all abilities.

The event will be held at the NRG Center, which was formerly Reliant Center, at Hall E.

Here is the time schedule:

  • Friday 11 a.m.-5 p.m.
  • Saturday 11 a.m.-5 p.m.
  • Sunday 11 a.m.-4 p.m.

Below are links for more event information:

Register to attend (free)

Map and list of exhibitors

List of Events, including Service Animal demonstrations

Directions, Parking, and Transportation Information

Community Ambassadors

Closer to the date of the event, a list of exhibitors for screen readers will be provided. Hands raised in blue light.

Register now to attend, and indicate any accommodations needs, including the need for sign language interpreters or CART captioned workshops.

 

 

New Law Revision Gives Deaf Patients the Choice of Accommodations

Question mark symbol
Many people who are Deaf, Hard of Hearing, or Deaf-Blind have questions about accommodations they may receive at their doctor’s office or local hospital. photo credit: question mark via photopin (license)

If you read Deaf blogs or Deaf organizations’ websites for information about requesting and receiving live sign language interpreters for medical appointments, you probably won’t find recent news about a law revision giving patients who are Deaf many rights.

Revisions to part of the Affordable Care Act bring more rights–including:

  • the right to choose which accommodations work best for you,
  • how health care providers need to post notices with information about how to get an interpreter or other accommodations, and
  • requirements for interpreters your health care provider uses to communicate with you.
Quote: Heaven on Earth is a choice we must make, not a place we must find. Wayne Dyer
A beautiful life is the result of choices we make, and now, Section 1557 brings more choice to the Deaf community. photo credit: Wayne Dyer Heaven on earth is a choice we must make, not a place we must find via photopin (license)

The National Association of the Deaf’s website has a “Position Statement on Health Care Access for Deaf Patients” that doesn’t include the most recent information about laws that now give patients who are Deaf the right to choose: the best communication method for them, whether they need a live or remote interpreter, and more.

Deaf Organizations Provided Input for the Law Changes

We’ve examined the most recent law revisions for you. We asked the National Association of the Deaf’s Policy Counsel of the Law and Advocacy Center, Zainab Alkebsi, Esq., why the latest law revisions aren’t on the organization’s website. She said that the National Association of the Deaf, or NAD, gave formal comments to Health and Human Services regarding the revisions to a part of the Affordable Care Act that now gives patients who are Deaf, Hard of Hearing, and Deaf-Blind, the right to choose.

Changes Section 1557 Brings

The part of the law that provides the changes is Section 1557.

Woman holds up sign that says I'm Deaf, No VRI
Galveston resident Janie Morales prefers a live interpreter. Photo Credit: Anthony Butkovich

Here are changes Section 1557 addresses, when your medical provider:

  • denies you an interpreter,
  • tells you to bring your own interpreter,
  • asks you to use family members or friends as interpreters for your appointment,
  • or when you are told an interpreter can’t be provided because they are a small practice.

All of the above excuses are now removed by Section 1557 of the Affordable Care Act, which Health and Human Services has revised.

The changes are so broad, this is probably one of the reasons Alkebsi said the NAD is transitioning their website to a new one.

The Biggest Change the Law Brings for the Deaf Community

The language for Section 1557 is complicated. One of the most important revisions for the Deaf community says healthcare providers should give individuals a choice about how they will communicate.

Section 1557 says medical providers should “give primary consideration to the choice of an aid or service requested by the individual with a disability.”

Woman holds stomach in pain while doctor touches her back to reassure her.
When a patient is in pain, communicating in their language is the best way to understand them. photo credit: Deadly Listeria Food Poisoning: Who are at Risk? via photopin (license)

In a time when many health care providers are considering providing remote sign language interpreters, often without asking patients who are Deaf what is most appropriate for them, Health and Human Services reaffirms federal laws to defend the individual’s right of choice to determine what accommodations will help them understand their health care providers best.

Section 1557 revisions are based on Health and Human Services interpretation of the Americans with Disabilities Acts’ Titles II and III.

Title III says that public service providers need to provide accommodations for people with disabilities.

Doctor enters information into an iPad.
Part of good medical care is recording information correctly. This is done through communicating in the patient’s language. photo credit: NEC-Medical-137 via photopin (license)

The department’s interpretation of Title II has brought the most changes, because anyone who receives government funding such as Medicare or Medicaid or other financial resources, which includes almost every medical practice and hospital, must follow the law. And the department determined that the law calls for the health care providers to give “primary consideration,” or first choice, to the person with a disability.

Removal of Economic Burden as Reason for Not Providing an Interpreter

Before, smaller health care practices, such as a clinic or dentist’s office, were allowed to give an excuse for not providing interpreters if the costs of the interpreter was a “burden” to the practice.

Boy testing eye sight in front of eye chart.
Section 1557 revisions require all health care providers, no matter the size of their office, to provide accommodations for patients of all abilities. photo credit: Boy testing eye site via photopin (license)

With the Section 1557 revisions, claiming a financial burden for providing barrier free healthcare with sign language interpreters is removed.

Why Using Family, Friends, or Inexperienced Interpreters May Not be Appropriate

Street sign with multiple emotions names, such as Greed, Happiness, Fear, Love.
If friends and family members aren’t trained to interpret without involving their emotions, their ability to interpret is affected. photo credit: Greed Happiness & the Rest via photopin (license)

Each individual has a choice about their needs. It’s sometimes difficult to know what’s best, though.

Health and Human Services determined that interpreters should be familiar with medical vocabulary, or “terminology,” as well as how healthcare providers communicate, or “phraseology.”

According to the revisions, “…we added the words ‘terminology’ and ‘phraseology’ in both definitions to align the final rule’s description of the requisite knowledge, skills, and abilities an interpreter must possess with those recognized within the field.”

Federal law has already determined that having people under the age of 18 should not interpret for anyone. Why? It can be psychologically damaging to children to interpret for others and feel responsible for their health. If things go poorly, the child may feel responsible for injuries or death. Besides this, some material covered during health care appointments may be too advanced or mature for children.

Stamped paper reads: confidential health information to be opened by addressee only
Will your friends and family members keep your medical appointment confidential if they interpret for you? If not, let your health care provider know! They have an obligation to make sure your information is kept private. photo credit: Geez LabCorp… via photopin (license)

When selecting whether a friend or family member should interpret for your medical appointment, consider if they will:

  • understand medical vocabulary,
  • keep your medical appointment confidential, and
  • avoid getting emotional.

Required: Notices about How to Request an Interpreter or File a Complaint

Sign shows little girl pointing away and says: Complaint Department that way 200 miles.
Your health care provider’s notice should point out where to file a complaint. Hopefully, it’s not far away! photo credit: 12/28/15 Complaint Dept via photopin (license)

Section 1557 also requires providers to have notices with information about how to request an interpreter or other accommodations, as well as information about who to contact if you have a grievance, or complaint.

If your health care provider doesn’t have this notice, they can find examples of what language to use on their notices on the Section 1557 web page, under the Appendix Section.

Those Receiving Government Money Can’t Discriminate

Health and Human Services cited many disability laws, including Section 504 of the Rehabilitation Act, which doesn’t allow for any government contractor–that is, anyone receiving money from the federal government–to discriminate against patients, even if the cost of interpreters is more than the money they make from patients.

Tax Assistance for Health Care Providers

While this could seem unfair to health care providers, if they make less than $1 million a year and have a staff of 30 people or less, they qualify for a tax deduction. This allows them to get their money back.

The IRS saw this coming, because their 2014 Fact Sheet said, “Follow the person’s cues to determine the most effective accommodation.”

Even the IRS recommended asking the person who is Deaf, Hard of Hearing, or Deaf-Blind, which accommodation they needed, and not assuming it or basing the decision on the health care provider’s choice.

Health care providers should discuss interpreter costs with their financial professional to determine which tax credits and/or deductions they can take for these expenses.

More Ways for Providers to Save Money

Save Money sign.
Some health care providers qualify for tax credits, while others can write off some interpreter expenses. Avoiding lawsuits by providing qualified interpreters is another way to save money. photo credit: Education Save Money via photopin (license)

Certified and/or qualified interpreters protect providers from liabilities that may arise from patients who are Deaf, Hard of Hearing, or Deaf-Blind that don’t understand them and whose conditions worsen as a result. Cases like this may result in lawsuits, some of which the U.S. Department of Justice joins.

Lawsuits can be more expensive than personal damages alone, because health care providers may be required to:

  • provide staff training,
  • document their processes,
  • undergo government supervision, and
  • potentially have to assign or hire staff to manage accommodations requests.

You can learn more about these court cases and read the decisions here.

Lawsuits are Rarely the Answer: Education and Advocacy Are

CGLogo_Confetti_ROUNDEDWhen we at The Capsule Group and Sign Shares, Inc. communicate with the Deaf community as advocates, they often ask about us how to file a lawsuit. While going to court is an option, it’s a choice that involves a lot of time and effort.

Only serious incidences usually end up going to court, such as when not understanding a health care provider resulted in serious health problems or worse.

Art of the ASL alphabet in glass
Many health care providers don’t understand that the ASL alphabet is different from English, as well as all vocabulary words. photo credit: ASL Alphabet & 0-10 via photopin (license)

First, educate your health care professional about your needs. You can also send them to the Section 1557 website at http://1.usa.gov/24j8z7j to learn about the changes and your right to choose an interpreter or the services you need to communicate with them.

Violations of Section 1557 can already be reported to Health and Human Services. These violations are Civil Rights Complaints and can be completed online.

Educating yourself and others about the changes in the law is one of the quickest ways to make sure everyone knows about them understands them.

If you know of anyone needing this information, please share this article or link with them.

 

Where to Connect to DeafBlind Resources

The Sign Shares’ blog has posted the past few articles relating to support people for individuals who are DeafBlind, or who have
both vision and hearing loss.

However, how do individuals seek DeafBlind Interpreters, Support Service Providers (SSPs), or Interveners? How do those who are DeafBlind pay for them?

One of the first stops for assistance is vocational rehabilitation. If an individual has a severe enough disability–and having both
vision and hearing loss qualifies–then most individuals can receive some assistance with services and/or equipment and training they need to maintain their independence from their state’s vocational rehabilitation program.

Here is a list of vocational rehabilitation agencies across America. It lists agencies by state.

Vocational rehabilitation may assist individuals who are going to school or work, as well as individuals who aren’t working and need support to live, work, and play independently.

Once an individual is a client of a vocational rehabilitation program, they may assist with the cost of DeafBlind Interpreters and potentially SSPs.

However, federal and state agencies, as well as cities, will provide these services if the individual requests them. They usually need some advanced notice so they have time to make an appointment for the individual to have services. Also, large businesses that serve the public are also required to provide these services as requested.

Schools provide Interveners as needed, and the request for one should be in a student’s education plan. The first step for this is for the student to be enrolled with special education or disability services programs at school or college/university. From there, they can request DeafBlind Interpreters and Interveners to assist with communication and/or learning, as is needed by the student.

While most services can be paid for through vocational rehabilitation, schools, colleges, and universities, as well as sometimes through government agencies and businesses, it
takes extra information to be prepared and learn what is needed for independence.

Joining organizations that have other individuals who have similar needs makes it easier to socialize and learn more about ways to adapt.

There are many organizations to choose from, based on the person’s needs and interests.

Here is a list of nationwide DeafBlind Organizations.

These supports are the beginning for a person who is DeafBlind getting assistance to have the services he or she needs to live the fullest life possible.

How Interveners Contribute to Services for People who are DeafBlind

There are a variety of supports available to people who are DeafBlind. Yesterday, the Sign Shares’ blog discussed the difference between DeafBlind Interpreters and Support Service Providers, or SSPs.

According to the National Task Force on Deaf-Blind Interpreting, there are three support roles for people who are DeafBlind.

  • DeafBlind Interpreter
  • Support Service Provider (SSP)
  • Interveners

While a DeafBlind Interpreter supports formal communication situations, and SSPs may assist with informal situations, guiding, and transportation, Interveners help educate individuals who are DeafBlind in ways that enhance their independence.

According to the National Task Force on Deaf-Blind Interpreting, Interveners often work with students who are DeafBlind, but can also work with children and adults in their homes and communities. These individuals need the one-to-one support of a trained, consistent professional who understands and is prepared to address the needs of the student.

Two people use tactile sign language
Interveners and DeafBlind Interpreters may work together in educational settings, with the Intervener focusing more on meeting individualized educational plan goals. photo credit: Communication via photopin (license)

Interveners team with school staff, family, and community providers to achieve individual goals for the person who is DeafBlind, according to the task force. They are gaining recognition as a service for individuals who are DeafBlind to have access to education under the IDEA, the law that guarantees equal access to education, and within their home and community,

According to the task force, “an Intervener provides a bridge to the world for the student who is DeafBlind” by facilitating access to the environmental information that is usually gained through vision and hearing, such as:

  • gathering information,
  • learning concepts and skills,
  • developing communication and language, and
  • establishing relationships that lead to greater independence.

Qualified Interveners have completed training and credentialed through the National Resource Center for Paraeducators (NRCPara) and may work together with school districts on the student’s Individualized Education Plan, according to the task force.

According to What’s My Role? A Comparison of the Responsibilities of Interpreters, Interveners, and Support Service Providers, the Intervene:

  • “acts in a manner that is governed by the local education agency and federal education laws,”
  • “uses the Individual Education Program as a road map for learning,” and
  • “is considered a paraprofessional and works with, but does not replace, the teacher.”

You can learn more about Interveners at the National Center on Deaf-Blindness and at http://intervener.org/.