Tag Archives: disabilities

Some do’s and don’ts when interviewing people with disabilities

Tara Haelle

About Tara Haelle

Tara Haelle (@TaraHaelle) is AHCJ's medical studies core topic leader, guiding journalists through the jargon-filled shorthand of science and research and enabling them to translate the evidence into accurate information.

NPS Graphics via commons.wikimedia.org

As I write this blog post, I’m scheduled to interview two individuals for a story based on a study about autism and its link to an increased risk of certain comorbidities. One person is an autistic adult, and the other is the parent of an adolescent diagnosed with an autism spectrum disorder.

At this point in my career, I have spoken with many autistic individuals and count several among my friends, but before I had known anyone on the autism spectrum, I likely would have felt a bit of initial uneasiness: Is there anything I should or shouldn’t say or do? Will they communicate in ways I am familiar with? Will they understand how I am trying to communicate? Continue reading

Bringing oral health tips and tools to disabled adults

Mary Otto

About Mary Otto

Mary Otto, a Washington, D.C.-based freelancer, is AHCJ's topic leader on oral health and the author of "Teeth: The Story of Beauty, Inequality, and the Struggle for Oral Health in America." She can be reached at mary@healthjournalism.org.

I recently had the chance to spend the morning with Malissa Savage, a community health worker dedicated to reaching people in need of dental care.

She works for Allegany Health Right, a nonprofit group with a mission to improve the lives of poor and uninsured adults living in a pocket of Appalachia that is located in the far western tip of the state of Maryland.

On visits to senior centers, health fairs, unemployment offices and other sites, Savage offers practical lessons of prevention. She also helps connect people with urgent dental needs to dentists who work with Allegany Health Right to provide care. Continue reading

NYT series digs into overprescription and developmentally disabled adults

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

In the series Abused and Used, New York Times reporter Danny Hakim and a host of his colleagues have been investigating how public resources are used to treat developmentally disabled New Yorkers. The series is ongoing, but hit an inflection point with the publication of Hakim’s piece on the few-strings-attached use of very powerful drugs to treat some of the state’s most vulnerable adult residents.

Developmental disabilities, Hakim writes, often manifest themselves in ways that are easily mistaken for mental illness, and these misdiagnoses can lead to unnecessary or improper medication. “In fact,” Hakim writes, “developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.”

Hakim’s reporting is rich with both anecdotes and data. These paragraphs from the series will give you an idea of how he approached the issue.

Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.

…a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.

And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.

Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.

Passengers with disabilities encounter obstacles in everyday commuting

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Despite progress prompted by the Americans with Disabilities Act, public transportation for people with disabilities is still challenging in many places.

The Washington Post‘s Dana Hedgpeth found that, on D.C.’s Metro system, people who rely on wheelchairs, canes and other aids are confronted by broken elevators, narrow walkways, dilapidated platforms, poor lighting and signage.

Metro has a door-to-door shuttle called for those with disabilities called MetroAccess but Hedgpeth says it is more costly, charging based on the time of day and distance a customer travels. One passenger says the service isn’t reliable and forces her to make travel arrangements a day in advance.

The accessibility issues can be downright dangerous at times. Hedgpeth cites cases in which people in wheelchairs have fallen and a blind man fell onto the tracks.

How do people with disabilities in your community get around? Is the system truly useful? Hedgpeth’s article should give you plenty of ideas about what to look for in a transportation system from the perspective of people with disabilities:

  • Can someone sitting in a wheelchair see signs?
  • Are announcements clear for people with impaired hearing?
  • How often are elevators out of service and, when they are broken, what is the alternative?
  • If there is an alternative system for passengers with disabilities, is it affordable? Do people using it face extremely long commutes or wait times?

The National Center on Disability & Journalism has information and a style guide for journalists covering disability issues.

Program for disabled kids has unintended effects

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Patricia Wen, of The Boston Globe, examines the Supplemental Security Income (SSI) program for children and finds the program “has gone seriously astray” and describes it as “a fast-growing alternative welfare system.”

And once a family gets on SSI, it can be very hard to let go. The attraction of up to $700 a month in payments, and the near-automatic Medicaid coverage that comes with SSI approval, leads some families to count on a child’s remaining classified as disabled, even as his or her condition may be improving.globe-ssi

Wen found that the program, which was intended to serve children with severe physical disabilities, now mainly serves children with behavioral, learning and mental conditions and carries financial incentives to put children on psychotropic drugs. She writes that preschoolers are the fastest-growing group to qualify for SSI, “largely because of a 12-fold spike in cases of speech delay. The government is aggressively trying to help these young children, but spends little time to see if they’re getting any better.”

Another, unintended, effect of the program is that teenagers on the program are declining to take part-time jobs despite their desire to start careers and not be dependent on the government. Wen explains “they fear working will jeopardize their disability checks. Their families are poor and need the money.”

Of interest to reporters interested in localizing the story, the package contains a data-driven interactive map that shows how many children in each state are receiving SSI assistance, the percentage who became eligible because of mental disabilities and the top five diagnostic categories.