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Mom of daughter with Down Syndrome and heart defect fights transplant discrimination

Jackie Ward is the mother of a three-year-old daughter with Down Syndrome and a heart defect. She recently became an advocate for disability rights after experiencing discrimination from doctors while applying for a heart transplant for her daughter. Ward is now teaming up with Ohio state legislators to pass laws that will give applicants with disabilities more leverage. Check out this article and video interview with Jackie Ward from the Columbus Dispatch.

“A 2008 survey by researchers at Stanford University found that 85 percent of pediatric transplant centers consider neuro-developmental status in the eligibility process at least some of the time, Hansen said. And in the same study, 62 percent of the centers said eligibility decisions based on disability tended to be made informally, making discrimination difficult to show.”

 

DeVos & Dept of Education defend purge of “outdated” disability guides

The U.S. Department of Education and Secretary Betsy DeVos were criticized Friday after announcing news they rescinded 72 guidance documents related to education policies for students with disabilities. according to the Washington Post, the document purge was prompted by President Donald Trump’s initiative to reduce unnecessary federal government regulations. After Friday’s announcement raised alarm amongst disability and education advocates the Dept. of Education released a followup list of explanations saying the documents were “outdated, unnecessary or ineffective.” Click here to read the Washington Post’s full report.

Click here to read a full list of the 72 documents rescinded by the Office of Special Education and Rehabilitative Services.

Chicago Tribune Wins 2017 Disability Reporting Award

A Chicago Tribune investigation into the mistreatment of disabled adults in Illinois group homes won the top honor in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability, the only journalism awards competition devoted exclusively to disability reporting.

In “Suffering in Secret,” Tribune reporters Michael J. Berens and Patricia Callahan identified more than 1,300 cases of documented harm since July 2011 in Illinois’ taxpayer-funded group homes and their day programs. The reporters uncovered at least 42 deaths linked to abuse or neglect in group homes or their day programs and uncovered state records of residents fatally choking on improperly prepared food, succumbing to untreated bed sores and languishing in pain from undiagnosed ailments.

Second place went to the Brian M. Rosenthal of the Houston Chronicle. Third place was awarded to Mona Yeh, Sonya Green and Yuko Kodama for reports aired on Seattle-Tacoma public radio station 91.3 KBCS, and honorable mention went to Belo Cipriani of The Bay Area Reporter.

“PBS NewsHour” anchor Judy Woodruff, who served as a judge, noted that the Chicago Tribune’s investigation had real consequences in Illinois, where state officials vowed increased transparency and oversight of taxpayer-funded group homes and legislators are considering laws to force reforms. The license of one group home provider highlighted in the series was revoked, and residents were moved to other facilities. “The amount of time that went into this project and what the reporters were able to uncover just blew me away,” Woodruff said.

The three-part series was a finalist for the 2017 Pulitzer Prize in Investigative Reporting as well as the winner of the Worth Bingham Prize for Investigative Journalism and an Investigative Reporters and Editors Award in 2016.

Berens and Callahan will accept the first-place award and a $5,000 cash prize Nov. 27 at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, where they also will deliver a public talk on their work. Their appearance, which is part of the school’s “Must See Mondays” lecture series, will be at 7 p.m. in the school’s First Amendment Forum. It is free of charge and open to the public, and sign language interpreting and captioning services will be provided.

The second place Schneider award and a $1,500 prize were awarded to Rosenthal of the Houston Chronicle for an investigation that revealed how Texas officials systematically denied special education services to thousands of children. The seven-part series, “Denied,” found that Texas placed a cap on how many children could receive special education services, saving billions of dollars but denying services to children with disabilities ranging from epilepsy and blindness to autism and attention deficit disorder.

Judges said they were shocked by Rosenthal’s revelations. The state’s actions, they said, showed a complete disregard for children with disabilities and their families.

Third place and a $500 prize went to Yeh, Green and Kodama for two radio pieces chronicling the experiences of one wheelchair user trying to navigate public transportation in Seattle. “Dorian Wants Transit Policy Toward Disabled Persons to Change,” aired on the Seattle-Tacoma public radio station 91.3 KBCS and was supported by the Association of Independents in Radio.

Cipriani, who is blind, received an honorable mention and a $250 prize for a series, “Seeing in the Dark,” published in the Bay Area Reporter. Cipriani writes about the disabled community in the Bay Area, challenging stereotypes about disability ranging from sex to parenting.

Judge Tony Coelho, a former six-term U.S. congressman from California and the primary sponsor of the Americans With Disabilities Act, said Cipriani is an important voice and one of a growing number of people with disabilities who are “writing about the everyday lives of people with disabilities.” Too often, he said, reporting on disabilities is “about us” rather than “by us.”

In addition to Coelho and Woodruff, the judges for this year’s contest were Pulitzer Prize-winning former Washington Post reporter Leon Dash, now Swanlund Chair Professor of Journalism at the University of Illinois at Urbana-Champaign, and Jennifer Longdon, a Phoenix-based writer, speaker, advocate and policy adviser on issues related to disability.

The Schneider Award was established in 2013 with the support of Schneider, a retired clinical psychologist who has been blind since birth and who also supports the national Schneider Family Book Awards. The reporting contest is administered by the National Center on Disability and Journalism at the Cronkite School.

Since 2013, the top Schneider Awards have gone to Ryan Gabrielson of California Watch, Dan Barry of The New York Times, Heather Vogell of ProPublica and Chris Serres of the Minneapolis Star Tribune.

Woodruff wins Cronkite Award and thanks NCDJ

Judy Woodruff received the Walter Cronkite Award for Excellence in Journalism today during a ceremony in downtown Phoenix. The annual award is given to a prominent journalist who embodies the integrity and impeccable professionalism of Cronkite himself. This year’s award was given to Woodruff and her late PBS NewsHour co-anchor Gwen Ifill. Ifill’s brother accepted the award on her behalf.

Woodruff gave an inspiring acceptance speech that can be seen on the Cronkite School’s online Vimeo channel HERE. She encouraged young reporters to pursue investigative journalism and credited the mainstream media for breaking recent headline news about Harvey Weinstein’s sexual harassment scandal and lobbying by the drug industry.

Woodruff also thanked the National Center for Disability Journalism for its work promoting awareness of disability stories. Listen for Woodruff’s kind remarks about the NCDJ and its director Kristin Gilger at minute 4:07 of her speech.

Elderly at risk for asset seizure by government “guardians”

An investigative report by Rachel Aviv in The New Yorker reveals how elderly citizens can become involuntary victims of private government contractors hired to manage their financial assets. The ambiguous mental health of some elderly patients exacerbates their ability to defend their possessions and right to autonomy.

‘Deej’ film spotlights nonspeaking student with autism

A new documentary, “Deej,” available for purchase and set to air on PBS October 17th. The film follows the life of DJ “Deej” Savarese who is a nonspeaking autistic student who communicates through text-to-talk tablets. He is a talented writer and uses his unique perspective to spread awareness about disability rights. Check out the film’s poetic trailer on YouTube and catch the full film on PBS’s America Reframed next Tuesday, Oct 17th.

DEEJ homepage = https://www.deejmovie.com/

 

Romanian mother resolves to change disability language in her country

By Jenna Miller

Nine years ago when Ruxandra Mateescu’s daughter, Olga, was born with special needs, she was stunned at the lack of information and the gaps in care.

“When Olga was born I tried to look up with Google what retarded means because the doctor said when she grew up she would be retarded or maybe dead or a vegetable. He used words like that,” Mateescu said in a Skype interview.

Mateescu lives in Bucharest, the capital city of Romania and is fluent in both English and Romanian. People with disabilities don’t have many rights in Romania, and much of the public is uninformed about disability issues, “like the fifties in the United States,” she said.

In addition, the Romanian health care system is difficult to navigate, Mateescu said, and she couldn’t figure out where to go to get more information about her child. Even after nine years and many doctors visits, Olga has never had an official diagnosis to classify her disability.

A journalist who worked for a parenting website, Mateescu did what came to her naturally: She started blogging about her daughter, their lives and the struggles she faced trying to find information and support. Other parents responded and asked her to keep writing. She now runs a website that features stories of people with disabilities and their families.

“I started writing when I was very angry, so my writing was very angry on everybody,” she said. “Many of them [other parents] told me that I was courageous… I don’t know.”

Mateescu said it was taboo in her country to even talk about disabilities when she started her blog, but the situation is slowly improving. Now there are more blogs devoted to the subject and mainstream media also has begun to show interest. However, Mateescu calls most of the reporting shallow and says the focus is “on the pity element.” Pejorative language and offensive terms are still common in mainstream news both on television and in newspapers.

“If experienced journalists are doing that, they don’t realize that it is wrong,” she said “Somebody has to say, it’s not okay– this is how you do it.”

One day Mateescu was searching the internet for resources on disability issues and she happened upon the National Center on Disability and Journalism’s style guide, which provides guidance on words and terms related to disability. She thought it would be a great help to journalists and communicators in her country, but there was a problem: The English language guide would have to be translated into Romanian.

She started by sending an email to the center at Arizona State University asking for permission to undertake a translation. “I wrote and I said, ‘Well, they will never answer back they are huge,’ and I received the email one morning, and I was like ‘Wow, they answered.’ We are not used to that reaction of kindness.”

Across the world in Phoenix, Arizona, NCDJ Director Kristin Gilger said she had long hoped to have the guide, which contains almost 100 words and terms, translated into other languages. She immediately said yes.

Mateescu then put out a call on social media for help. Seven volunteers responded — friends, relatives and even an English teacher who happened to be her manicurist’s husband. Together they combed through the guide. Some words didn’t translate or didn’t exist in Romanian. For those, the group did their best to supply the closest Romanian approximation. They worked quickly. It took one week to translate the guide and another to check it and get it ready for publication.

Once completed, Mateescu tried to get the style guide out to as many people as possible by posting it on her website and on social media. She said she immediately starting getting “likes” and “shares.” She is now setting up meetings with journalists and parents to discuss the guide and advocate for its use by Romanian journalists.

Along with improvements in language, Mateescu hopes to see more investigative stories about the lack of support and infrastructure for people with disabilities in her country. According to a report compiled by the Academic Network of European Disability Experts, 24 percent of children with disabilities in Romania are not registered for any form of education. The 24 percent includes Mateescu’s daughter, Olga.

The situation isn’t much better for adults with disabilities. The same report shows that fewer than 16 percent of people with disabilities are employed. It is common for people to stop and stare at people with visible disabilities in public. And Mateescu says it’s almost impossible for people with physical disabilities to get around her home city of Bucharest. Many public buildings, busses and metro stations don’t have elevators or ramps, and most homes are difficult to get into and out of for those using wheelchairs.

Mateescu says it is painful to think about the challenges her daughter will face when she grows up, but she tries to focus on fighting for the things she can change.

“I don’t know if my daughter will have some benefits from that, but, for sure, the next generation of parents will be much better off than my generation is now,” she said.

Arizona special-ed funding goes to schools with fewest students

A new article by Alia Beard Rau for the Arizona Republic explains how Arizona’s system for funding special education unequally benefits different schools.

“It’s a direct result of how the state funds education for students with special needs: Arizona’s spending on special education benefits schools with the fewest number of students who require it.

About one-third of Arizona students attend schools — most of which are charters — that receive more state money to serve students with special needs than those schools  actually spend for that purpose.”

Resources from Mobility International USA for travelers with disabilities

Mobility International USA promotes disability rights by facilitating international exchange for travelers with disabilities. They have several media publications including 1) a general “News & Events” page with travel blog posts from around the world 2) “A World Awaits You (AWAY)” periodical about specific regions such as Africa, and 3) “Ripple Effects,” a podcast of interviews with recent exchange travelers.

ACLU lawsuit alleges Chicago PD disproportionate brutality against people with disabilities

The ACLU has filed a lawsuit against the Chicago PD alleging its officers have not received proper training for interacting with people with disabilities. This Chicago Tribune article by Jason Meisner and Jeremy Gorner reports “The suit alleged the brutality was “magnified for people with disabilities.” Nationally, an estimated 33 to 50 percent of those killed by police have a disability, with approximately 25 percent of people killed having a mental illness, the suit alleged. The problem also extends to police use of nonlethal force, including with Tasers, the ACLU contended.”