Moving From Disability to Possibility | Humanities | JAMA | The JAMA Network

Source: Moving From Disability to Possibility | Humanities | JAMA | The JAMA Network

When I was in the first grade, an astute teacher noticed that I had trouble seeing the blackboard. This finding was quickly confirmed by a vision test. Formal evaluation by an ophthalmologist revealed that I had a rare degenerative retinal disease. Worse than that diagnosis was the ophthalmologist’s devastating prognosis for my life: attending college would be very challenging, sports and certain activities would be difficult or impossible, and it was unlikely that I would ever have a professional career.

Doctor’s care is a balance of skill, empathy for Virginia Tech Carilion School of Medicine student : Augusta Free Press

Source: Doctor’s care is a balance of skill, empathy for Virginia Tech Carilion School of Medicine student : Augusta Free Press

Alyssa Savelli has wanted to be a doctor for as long as she can remember. “When I was 5, I would just sit and watch Discovery Health Channel and watch open heart surgery.”

A learning disability as a child made Savelli second-guess her dreams. “As I worked with special tutors, I got over it, but it wore on my confidence for a long time. I still worried that medicine would be too hard for me.”

A life-altering illness in her family caused her to refocus on her early dream. During her freshman year at Virginia Tech, Savelli’s father was diagnosed with acoustic neuroma, a brain tumor that impacts a nerve that runs from the ear to the brain. Along with numerous doctors’ appointments, he had to undergo complicated surgery to remove the tumor.

“Through that period, I noticed what makes a good doctor,” Savelli said, in particular noting the work of Rafael Tarmargo, a neurosurgeon at Johns Hopkins Medicine who performed her dad’s surgery. “Despite the fact that Dr. Tamargo was a brilliant surgeon and he is really busy, he was also very empathetic. Whenever my dad came in, he would ask how everyone else in the family was doing by name.”

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National League for Nursing Publishes Vision for Achieving Meaningful Inclusion in Nursing Education

National League for Nursing Publishes Vision for Achieving Meaningful Inclusion in Nursing Education

Calls on Nursing Education Community to Lead Efforts to Expand Diversity Among Faculty and Students

Achieving Diversity and Meaningful Inclusion in Nursing Education A Living Document from the National League for Nursing

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February 2016

Lessons in Increasing Access to Care: Symposium at Rush brings together disability and health care leaders

https://www.rush.edu/news/lessons-increasing-access-care

By Kevin McKeough, Anne Burgeson & Kathleen Ziemer

Illinois Attorney General Lisa Madigan observed that “at almost any moment, any of us could be living with a disability, whether through our life circumstances or as we age. This is an issue that is personal to all of us, whether we realize it our not.”

Madigan the was the featured speaker at the Rush ADA 25 Symposium, held on Oct. 6 at Rush University Medical Center. The event celebrated the 25th anniversary of the Americans With Disabilities Act, which became law on July 26, 1990.

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White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on Employment of People with Disabilities (CCEPD)

Marks, B. & Ailey, S. (2014). White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on the Employment of People with Disabilities. Chicago, IL. Featured on The American Association of Colleges of Nursing (AACN) website: Accommodating Students with Disabilities (https://tinyurl.com/ov6tlec).

A White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs is available on the American Association of Colleges of Nursing (AACN) website. This paper also presents a new model of technical standards inclusive of all students with and without  disabilities.

ABSTRACT: Nurses  are  challenged  to  fill  the  new  and  expanded  roles  for  a  health  care  system  designed  to improve the quality  of  health  care.  Despite  the  unique  perspective  and  set  of  skills  that students and health professionals with disabilities have to address many of these challenges, people  with  disabilities  are  often effectively  excluded from  the  nursing  profession. The purposes of this white paper are to 1) frame the issues that prevent applicants with disabilities from entering nursing education and the nursing profession and 2) propose the changes necessary to engage the potential of people with disabilities to enhance nursing leadership and innovation  necessary  to transform  health  care.  Major  barriers  include  the  following: 1) outmoded admission standards that deter applicants with disabilities; 2) misconceptions about the capacity of students with disabilities to function effectively in the clinical components of nursing education; and, 3) lack of a comprehensive understanding of issues related to patient safety. This paper begins with an historical overview of the journey toward the acceptance of nurses with disabilities, including civil rights legislation, judicial rulings with reference to specific landmark cases, and the development of current technical and educational standards. The paper also presents a new model of technical standards inclusive of all students with and without  disabilities, along with recommendations  supportive  of  students with  disabilities  in admission, matriculation and graduation from nursing programs.


Additional Resources

  1. A New Model of Technical Standards
  1. White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs
  1. ADAAA and Accommodations



Citation:
Marks, B & Ailey, S. A. (2014) White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs. Sacramento, CA: California Committee on Employment of People with Disabilities (CCEPD).

White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on Employment of People with Disabilities (CCEPD)

A White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs is available on the American Association of Colleges of Nursing (AACN) website. This paper also presents a new model of technical standards inclusive of all students with and without  disabilities

White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs
for the California Committee on Employment of  People with Disabilities (CCEPD)

Nurses  are  challenged  to  fill  the  new  and  expanded  roles  for  a  health  care  system  designed  to improve the quality  of  health  care.  Despite  the  unique  perspective  and  set  of  skills  that students and health professionals with disabilities have to address many of these challenges, people  with  disabilities  are  often effectively  excluded from  the  nursing  profession. The purposes of this white paper are to 1) frame the issues that prevent applicants with disabilities from entering nursing education and the nursing profession and 2) propose the changes necessary to engage the potential of people with disabilities to enhance nursing leadership and innovation  necessary  to transform  health  care.  Major  barriers  include  the  following: 1) outmoded admission standards that deter applicants with disabilities; 2) misconceptions about the capacity of students with disabilities to function effectively in the clinical components of nursing education; and, 3) lack of a comprehensive understanding of issues related to patient safety. This paper begins with an historical overview of the journey toward the acceptance of nurses with disabilities, including civil rights legislation, judicial rulings with reference to specific landmark cases, and the development of current technical and educational standards. The paper also presents a new model of technical standards inclusive of all students with and without  disabilities, along with recommendations  supportive  of  students with  disabilities  in admission, matriculation and graduation from nursing programs.

Additional Resources

  1. A New Model of Technical Standard for Nursing Education Programs

  2. White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs

  3. ADA Amendments Act and Accommodations

Citation
Marks, B & Ailey, S. A. (2014) White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs. Sacramento, CA: California Committee on Employment of People with Disabilities (CCEPD).

EEOC Sues Muskegon Family Care for Disability Discrimination

Medical Provider Fired Employee with a Disability, Federal Agency Charges

DETROIT – Muskegon Family Care, a medical services provider located in Muskegon, Heights, MI, violated federal law by firing an employee due to a disability, the U.S. Equal Employment Opportunity Commission (EEOC) alleged in a lawsuit filed today.
According to EEOC’s suit, Avis Lane worked for Muskegon Family Care as an outreach enrollment coordinator for over a month when it fired her based on information obtained during her pre-employment physical.
Firing an employee due to a disability violates the Americans with Disabilities Act of 1990 (ADA). EEOC filed a lawsuit in U.S. District Court for the Western District of Michigan (EEOC v. M.G.H. Family Health Center d/b/a Muskegon Family Care, Civil Case No.: 1:15-CV-00952) after first attempting to reach a pre-litigation settlement through its conciliation process. EEOC’s lawsuit seeks back pay, compensatory damages, punitive damages, and injunctive relief — including a court order prohibiting Muskegon Family Care from firing disabled employees in the future.
“Firing a qualified employee, who successfully performed the job for over a month, based on information obtained during a physical violates the ADA,” said Laurie Young, regional attorney for EEOC’s Indianapolis District. “Employers cannot use recommendations from a third-party health examiner without determining for itself whether the employee can actually do the job.”
EEOC enforces federal laws prohibiting employment discrimination. Further information about EEOC is available on its web site at
www.eeoc.gov.

Supporting Nurses and Nursing Students with Disabilities

Supporting Nurses and Nursing Students with Disabilities
Neal-Boylan, Leslie PhD, RN, APRN, CRRN, FAAN; Marks, Beth PhD, RN; McCulloh, Karen J. BSN, RN
AJN, American Journal of Nursing:
October 2015 – Volume 115 – Issue 10 – p 11

Federal agencies and nursing organizations say it’s high time to put aside preconceptions.
Nursing students and nurses with disabilities face discrimination and bias both in schools of nursing and in the workplace. This can be overt or subtle and can take many forms. In March 2014, nurses spoke up on behalf of, and with, nurses with disabilities at a policy roundtable in Washington, DC, cosponsored by the National Organization of Nurses with Disabilities (NOND) and the Department of Labor, Office of Disability Employment Policy. Representatives from several federal agencies and national nursing organizations attended the meeting, where a plan of action was developed through the collaboration of federal agencies, nursing and disability rights organizations, nurse educators, researchers, clinicians, and nurses with disabilities.

Diversity among doctors: Students with disabilities are finding their place in medical schools—and beyond

Diversity among doctors: Students with disabilities are finding their place in medical schools—and beyond

Cathy Gulli

September 25, 2015

For Jessica Dunkley, getting into medical school was no ordinary childhood dream. Deaf since the day she was born, Dunkley aspired to become a doctor when, at age 10, her aunt gave her a plastic human anatomy model with removable organs.

She didn’t think it was possible until, in her mid-20s, she happened to read about deaf doctors practising in the United States. “I realized the opportunity was out there,” and she became “determined to do medicine.” Dunkley applied to numerous medical schools and, in 2010, completed the undergraduate program at the University of Ottawa, where a sign language interpreter accompanied her to class and clinical sessions. Today, Dunkley is finishing her second year of residency in public health and family medicine at the University of Alberta—making her one of the first deaf doctors in Canada.

Dunkley’s accomplishment represents the latest diversification of medicine, which was first practised mostly by white male doctors, and has since flourished with the inclusion of women and people of different races and ethnicities. Now the profession is set to expand again, as students with disabilities—including limited mobility or dexterity, hearing or vision loss, learning or developmental disorders, and psychological or mental health issues—are increasingly being accepted and supported at medical schools.

Like Dunkley, a handful of other young Canadians are making history by becoming doctors with disabilities: Megan Jack, who is also deaf, graduated from the University of Manitoba in 2013, and is now a family physician. Janel Nadeau had a stroke at 19, which partially paralyzed her and has affected her memory; she is finishing her training as a neurologist at the University of Calgary. Steven Daniel was paralyzed from the waist down during a paratrooping accident while serving in the military; although he is in a wheelchair, Daniel is training to be a family doctor at the Northern Ontario School of Medicine.

Part of what makes Dunkley’s experience so remarkable is the legal precedent she’s established along the way. In late June, she won a human-rights case against the University of British Columbia, which failed to provide her with a sign language interpreter in 2010, when Dunkley was supposed to start her residency. (She was later accepted at the University of Alberta, which provides interpreters.) Dunkley says the discrimination “came as a shock,” but she was not deterred. This ruling means others won’t be, either. “I just knew I didn’t want the next person to go through this,” says Dunkley. “I’m pleased it [will] improve accessibility.”

While disabled doctors have always practiced—in 2011, there were approximately 9,000 working, according to Statistics Canada—most of them became disabled after their education and training. What’s different “is the entry point,” says Melanie Lewis, associate dean of learner wellness and advocacy at the University of Alberta’s faculty of medicine and dentistry. “You have medical students presenting with disability.”

Over the last five years, there has been “a big tipping point” at medical schools toward “embracing the possibility of accommodation and looking at what we can do [for disabled students], rather than dismissing that it’s a possibility,” says Lewis, whose office supports students such as Dunkley with a range of conditions, including sleep disorders, depression, epilepsy and multiple sclerosis. “We’re recognizing that medicine needs to attract people [who] represent the diversity in society in order to provide good care.”

That’s forced universities and students to get creative. Dunkley has had to invent sign language for medical terms. She uses a digital stethoscope or portable ultrasound machine to check a patient’s heart. In the operating room, colleagues wear clear surgical hoods rather than paper face masks so she can lip-read. Daniel has used a “stand up” wheelchair, which allows him to be positioned upright at a patient’s bedside during surgery or in the emergency room. He gets help “scrubbing in,” and his colleagues position his wheelchair at the operating table.

Universities must identify the needs of students and residents, figure out how to meet their needs on campus and inside hospitals, then determine “who is going to pay,” says Geneviève Moineau, who was undergraduate dean at the University of Ottawa when Dunkley was a student. Since then, accommodation is “a topic that has become more important within our faculties,” says Moineau, now president of the Association of Faculties of Medicine of Canada.

Part of the conversation is about how impairment can actually facilitate better doctor-patient relationships: A disabled doctor may empathize more with patients, who, in turn, may relate to or trust a disabled doctor more because they feel understood. Dunkley has experienced this first-hand. “People come in and they are frustrated or going through a painful experience, and they feel they are the only one,” she says, “and then they [see] me and it just [gives] them a better perspective.”

What’s more, disabled doctors have all been patients, so they understand personally how a doctor’s disposition and bedside manner can affect someone. While Nadeau was recovering from her stroke, she saw “the whole spectrum of doctors,” and that’s partly what motivated her to pursue medicine. “I was determined to add to the good ones.”

While disabled doctors may be better equipped to bond with patients, it can also alienate them from other physicians. “You can sense this uncertainty or questioning about how you are going to be able to do it,” says Dunkley. This can be especially challenging during medical training, when students and residents move between different hospitals and clinics for brief rotations. “The most problematic people are usually [those] who do not work with me directly, and they have assumptions.”

That medical students and residents face stigma because of a health condition is ironic—but not so surprising. “There’s some deep psychological theory around how doctors in general may not necessarily accept their mortality,” says Vera Krejcik, president of the Canadian Association of Physicians with Disabilities. “A lot of people have noticed a certain discomfort; colleagues don’t know how to negotiate being with somebody with a difference.”

Krejcik had a stroke while studying medicine at the University of Calgary. With limited use of one arm, she switched her focus from internal medicine to psychiatry. It was a matter of being “realistic,” says Krejcik. “I don’t worry about hobbling around or needing to suture.”

Before anyone can become a doctor, there are technical standards they must meet, both physical and cognitive, says Lewis, who helped Dunkley establish herself as a resident at the University of Alberta. But there are intangibles to consider, too. Dunkley and others are proving that. As Lewis puts it, “Any candidate who comes from an extraordinary background with a unique perspective, they often do make extraordinary physicians.”