A new project and website from the UCEDDs at Georgetown, Georgia State, and Children’s Hospital Los Angeles, and in collaboration with AUCD.
This project is designed to research, develop, and disseminate a set or resources for the national network of University Centers for Excellence in Developmental Disabilities (UCEDDs) to embed cultural diversity and cultural and linguistic competence (CLC) in their curricula and training activities. The project will build the capacity of network programs to embed widely accepted CLC policies, structures, and practices across the four UCEDD core functions of pre-service training and continuing education, community services, research, and information dissemination. The project has a special focus on unserved and underserved communities in the United States, its territories, and tribal communities.
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.
“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?’”
Heller, T., Nelis, T., Collins, S. & Pederson, E.L. (2012)
This guide explains to people with disabilities how they can participate in research and training projects, describes what research and training is, and what a participant can do. It also provides examples of projects and of ways to address problems others have had when working on research and training. It was developed by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities and the National Gateway to Self-Determination. It is also on the National Gateway to Self-Determination website http://www.aucd.org/ngsd/template/index.cfm.
The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities (2010). Factor, A., DeBrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T. & Heller, T. This curriculum equips families and their adult relative with a disability with the communication skills and information to jointly plan for the future.
The HealthMatters Program is a research-based, field-tested program that’s already made a dramatic difference in the lives of participants with disabilities, this proven curriculum shows professionals how to conduct up to 59 one-hour sessions that help people make the best choices about health, exercise, and nutrition.
We will be starting the “HealthMatters Program Scale-Up: Multi-State Systematic Approach.” This project will examine the challenges to successful replication of the HealthMatters Program intervention, and the conditions and activities that contribute to effective adoption in real-world settings. By implementing this project, we have a unique opportunity to contribute to the larger body of research and science by developing a Scale-Up Logic Model detailing the necessary components to achieve systematic reach and impact among a population that often receives lifelong community based supports and health care services within complex and divers systems across the U.S.
Building Capacity Among Pediatric Residents to Promote Health Advocacy Among Persons with Developmental Disabilities (2009). Marks, B., Sisirak, J., Heller, T. & Cutler, A.
This Health Advocacy Curriculum was developed for the two hour Health Advocacy Workshop to improve access to quality health care for adolescents and young adults with developmental disabilities/special health care needs (DD) through improved attitudes, communication, health literacy, and health advocacy among Pediatric Residents.
The Health Matters Assessments V.1.0 (HMA) can be completed by employees of community‐based day and residential organizations providing services for people with intellectual and developmental disabilities (I/DD). The HMA packet will help you evaluate organizational needs and capacity for developing a health promotion plan including programs, services, environmental support, resources, culture, and employee knowledge and skills to do health promoting activities.
This updated guide helps families navigate the maze of adult services and supports for individuals with developmental disabilities. It responds to families’ need for a centralized source of information that describes adult services and how to access them. Content includes an overview of the service system and information on legal and financial planning, vocational and residential services, community supports, recreation and leisure opportunities, transportation, and advocacy. Information is in a user-friendly, question-and-answer format that was recommended by families. The guide is a template that other communities can follow in providing information on local services. Also available in Spanish!