Med student fills the gap in disability training

Source: theSOURCE

Class Acts-Human Health: Gallin develops curriculum aimed at improving care for patients with disabilities

During her first year at Washington University School of Medicine in St. Louis, Hilary Gallin studied racial and gender disparities in health care. She learned about various physicians’ approaches to community and global medicine. During overviews of medical specialties — from pediatrics to gerontology — Gallin learned about age-specific patient care.However, she felt one important element was missing in her medical education.

“I kept thinking about people with chronic disabilities, whether physical or cognitive,” said Gallin, who will earn her medical degree in May. “And I kept asking myself if I, as a physician, would have the knowledge and skills to best treat a patient with disabilities.”

Her answer was no.

“I also asked myself if, as a physician, I would have access to specialized exam equipment and other resources,” Gallin said.

She didn’t know the answer to that question. The topic wasn’t formally included in medical school training.

Feeling she’d be unprepared as a physician, Gallin decided to create a multiyear curriculum for the School of Medicine that focused on treating patients with disabilities. According to research published in 2016 in the journal Academic Medicine, most medical schools do not offer formal training in caring for people with disabilities; rather, disability often is viewed as an obstacle to overcome, and health-care providers sometimes discount disability’s social, emotional and cultural contexts.

However, physicians nationwide, including at Washington University, say medical schools have started recognizing the need for training students to effectively and compassionately treat patients with disabilities. Some medical schools have implemented various degrees of disability education or have begun the process of considering or developing a disability curriculum.

Gallin witnessed firsthand the struggles facing people with disabilities. The 29-year-old grew up with a friend who navigated life in a wheelchair due to cerebral palsy, an incurable disorder caused by abnormal brain development, often before birth, that impairs motor function. Also, while a young girl, Gallin spent a lot of time in hospitals in her native New York while shadowing her mother, a pediatric ophthalmologist.

“These experiences inspired me to learn more about what I can do, what we can do, to help people with disabilities,” said Gallin, who also is earning a master of business administration this May from Harvard University and formerly worked as an investment banker at Goldman, Sachs & Co. on Wall Street. She believes business skills will make her a better doctor by guiding her through all aspects of the changing health-care system.

“I want to approach medicine from different angles instead of limiting myself to the clinical and research perspective,” said Gallin, whose undergraduate degree in biomedical engineering from Yale University provides an even deeper understanding of the industry as a whole. “A lot of major policy affecting health care is made without a physician in the room.”

Developing a disability curriculum

Academics aside, Gallin values considering patients’ personal backgrounds in evaluation and treatment. For instance, she imagined herself giving a medical exam to her friend with cerebral palsy. She wondered: “How would I weigh her? Would I need a special exam table? What’s it like to go to the doctor when you have a disability?”

So she asked her friend and other people with disabilities. Their insights reflected national findings that people with disabilities often feel that their overall abilities, self-knowledge about their conditions and quality of life are underestimated by health-care providers. Many felt embarrassed to discuss disability-related health concerns such as treating pressure sores or practicing safe sex.

“Physicians may assume the person is not sexually active, and that may not be the case,” said Gallin, who was elected by classmates and faculty to the Gold Humanism Honor Society, which honors those who exhibit compassion in medicine.

“Another example occurred when I was working on cervical cancer screenings, or pap smears, with the National Health Service in the United Kingdom,” Gallin said. “One primary-care physician cited that people with disabilities have lower screening rates, and he admitted that he didn’t feel competent in screening some patients due to lack of training. Physician lack of knowledge increases the risk for negative health outcomes.”

Indeed. “In the medical literature, physician education is cited as a source of health discrepancies in patients with disabilities,” Gallin said. “Formal training in medical school would help to remedy disability as a health disparity.”

A few weeks after Gallin started medical school, she sought guidance on developing a disability curriculum from one of her mentors, Alan I. Glass, MD, assistant vice chancellor for students and director of the Habif Health & Wellness Center, which offers student health services at Washington University.

“Because of her focus, passion and persistence, the project evolved into a mission within the medical school to better care for this large and important population,” Glass said. “Hilary’s work has become an important part of the diversity curriculum for medical students. It serves as a model for other schools.”

For the White House, too. In 2014 and 2015, Gallin presented her curriculum to the director of the National Council on Disability, the agency responsible for devising national policy for people with disabilities.

Fourth-year medical student Hilary Gallin finishes a practice exam with patient Julia Burgess of St. James, at Barnes-Jewish Hospital. (Photo: Huy Mach/Washington University School of Medicine)

“In developing the curriculum, I reached out to leaders to learn what they thought was needed in physician education,” Gallin said. “It was around the 25th anniversary of the Americans with Disabilities Act, and the White House director was curious to learn about what medical schools were doing to improve the care of people with disabilities.”

Washington University’s curriculum continues to evolve and improve, Gallin said.

“What is unique about the School of Medicine’s curriculum is that it builds on itself over time,” she said. “Students at other medical schools may receive informal training during their third year or attend isolated curriculum events over the year.

“But with our curriculum, students begin during the first year and continue throughout their studies,” she said. “They must demonstrate mastery of material through exams or standardized patient encounters, which is when an actor plays the role of patient and the student is scored based on performance.”

Gallin said she will continue to advocate for patients with disabilities — as well as all patients — when she begins her post-graduation residency in anesthesiology at the Harvard-affiliated Massachusetts General Hospital.

“One of a physician’s greatest assets is curiosity,” Gallin said. “With each person I treat, I will ask myself, ‘What are the preconceived assumptions that could hinder patient care?’”

Read more about the Class Acts of 2017 here.


Media Contact: Judy Martin
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There’s a Disability Rights Treaty. The United States Still Hasn’t Ratified it.

It opened for signature a decade ago. It’s time for the U.S. Senate to act.

Source: There’s a Disability Rights Treaty. The United States Still Hasn’t Ratified it.

On a Friday afternoon in July 2009, President Obama gave remarks in the East Room of the White House about the signing of an international human rights treaty to protect the rights of people with disabilities.

“Disability rights aren’t just civil rights to be enforced here at home; they’re universal rights to be recognized and promoted around the world,” Obama said. “And that’s why I’m proud to announce that next week, the United States of America will join 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities, the first new human rights convention of the 21st century.”

The treaty, known as CRPD, was inspired by U.S. leadership on disability rights and is modeled after the Americans with Disabilities Act (ADA) of 1990, which protects individuals with disabilities against discrimination in areas such as employment, public accommodations, and transportation.

“This extraordinary treaty calls on all nations to guarantee rights like those afforded under the ADA. It urges equal protection and equal benefits before the law for all citizens; reaffirms the inherent dignity and worth and independence of all persons with disabilities worldwide,” Obama said.

CRPD opened for signature 10 years ago today — and as the committee that monitors CRPD implementation meets in Geneva right now to consider reports from eight countries, it’s a good reminder that the United States isn’t one of them. Despite Obama’s signature nearly eight years ago, the treaty — ratified by 172 countries — still awaits U.S. Senate ratification.

In December 2012, a Senate vote (61–38) fell five votes short of the two-thirds majority required to adopt an international treaty. In July 2014, the Senate Foreign Relations Committee advanced the treaty (12–6) — but the full Senate never took a vote.

At a time when the United States has a president who mocked (while campaigning) a reporter with a disability, when the U.S. Secretary of Education is a threat to children with disabilities, and when the current U.S. Supreme Court nominee has repeatedly ruled against students with disabilities and who’s demonstrated a troubling approach to the rights of people with disabilities, it’s easy to feel discouraged about the state (and future) of disability rights.

But ratifying CRPD represents an opportunity to take bipartisan action and stand with the rest of the world in advancing the civil and human rights of people with disabilities everywhere. And it’s an opportunity to continue our nation’s tradition of advancing important human rights protections, as we did with the Rehabilitation Act, the Individuals with Disabilities Education Act, the ADA, and the ADA Amendments Act of 2008 — all signed by Republican presidents.

Disability rights are civil and human rights. Now, a decade after the treaty opened for signature, it’s time to finally make a global commitment to protecting disability rights by ratifying it.

Rights in mind: Thinking differently about dementia and disability

Tom Shakespeare -University of East Anglia, UK, Hannah Zeilig – University of the Arts London, UK, & Peter Mittler – University of Manchester, UK

Download Rights in Mind (2017)

Abstract

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.

YouthBuild: Goal Planning Tool

Goal Planning Tool Author(s): YouthBuild USA This goal planning tool was designed to engage staff across each program components and the young person in the goal planning and assessment process. This process should be introduced very early in the program year, ideally towards the end of mental toughness or shortly after the completion of mental toughness. It tracks the young person’s academic, career, and personal goals and aspirations while allowing both staff and young people to track assessment scores

Source: YouthBuild: Goal Planning Tool

Draft Principles for a Person-Centered Approach to Serious or Advanced Illness

Deadline: May 12, 2017

http://ltcombudsman.org/uploads/files/support/acl-person-centered-principles.pdf
ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide their work, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities. ACL is now seeking input from the people they serve-older adults, people with dementia, people with all types of disabilities, and families and caregivers, as well as partners in the aging and disability networks.  The Draft Principles for a Person-Centered Approach to Serious or Advanced Illness is available here. Send your comments, by May 12, 2017, to AdvancedIllness@acl.hhs.gov.

Women’s Refugee Commission – Disabilities

Source: Women’s Refugee Commission – Disabilities

As many as 7.7 million of the world’s 51 million people displaced by conflict have disabilities. People with disabilities are among the most hidden and neglected of all displaced people, excluded from or unable to access most aid programs because of physical and social barriers or because of negative attitudes and biases. They are often not identified when aid agencies and organizations collect data and assess needs during and after a humanitarian disaster. They are more likely to be forgotten when health and support services are provided. Often, refugees with disabilities are more isolated following their displacement than when they were in their home communities.

Key Reports & Resources

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Outcomes of “Partnering to Transform Healthcare with People with Disabilities” (PATH-PWD) conference

Research Team Sarah H. Ailey Principal Investigator Rush CON Molly Bathje Co-Investigator Rush CHS Tamar Heller Co-Investigator University of Illinois Award Period 6/1/16 – 5/31/17 Funding Source Agency for Healthcare Research and Quality (AHRQ) R13 Conference grant

Source: Partnering to Transform Healthcare with People with Disabllities (PATH-PWD) – Improving Acute, Primary and Transitional Health care with People with Disabilities | | Rush University

On March 23 and 24, 2017, leaders on disability rights and disability health care from around the country gathered at Rush University for the Partnering to Transform Healthcare with People with Disabilities (PATH-PWD) conference sponsored by Rush University and the Rehabilitation Research and Training Center on Developmental Disabilities and Health, University of Illinois at Chicago. The conference was funded by grants from the Agency for Healthcare Research and Quality (AHRQ) and the Special Hope Foundation.

IASSIDD PowerPoint presentation of the “Tackling Health Disparities and Implementing a Best Practices Healthcare Model: Report from (PATH-PWD) Conference” presented at the American Academy on Developmental Medicine and Dentistry (June 5, 2017).
Sarah H Ailey PhD RN APHN-BC CDDN, Tamar Heller, PhD, & Molly Bathje, PhD, OTR/L

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