To adequately meet the health care needs of people with IDD, more training is needed for health and medical professionals.
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When Jonathan Gardner reported that he had a pain in his leg, doctors automatically assumed it was related to the fact that he has autism.
“After a lot of time going through the medical thing and pushback from the doctors...I eventually found out that I had cancer,” Gardner told The Nation’s Health.
It is a story he recounts often in front of health care students in New England as part of Operation House Call, a training program from The Arc of Massachusetts. The program educates students at schools of medicine and nursing about the health care experiences of people with intellectual and developmental disabilities. Students receive six hours of personal stories, coursework and home visits with families.
Training programs such as Operation House Call, which was codified into Massachusetts state law in 2023, are necessary to train the next generation of health care professionals to improve the quality of care for people with IDD, who number about 8 million in the U.S.
In a survey of 75 medical schools, just 52% had some sort of disability awareness program, according to a 2017 study in the American Journal of Physical Medicine and Rehabilitation. A 2002 surgeon general report found medical schools spent an average of 11 minutes covering IDD over the course of four years.
A common excuse for IDD’s absence in school curricula is that there is no room for it, said Ellen Bannister, MA, a board of directors member of the Alliance for Disability in Health Care Education. If it does come up, it usually refers to disability as an adverse health outcome.
“It really does not honor the idea that people with disabilities and people with intellectual and developmental disabilities can have a very high quality of life, can be healthy, can live full lives, can participate in the community,” Bannister told The Nation’s Health. “The thing that is going to cause the most problems for them is the attitudes toward them and the lack of support and accommodation.”
This has led students to seek out training beyond their schools through disability advocacy organizations such as The Arc. There they learn important lessons such as the fact that non-verbal communication is still communication, and that knowing a patient’s baseline behavior is crucial when figuring out if something is amiss. Sometimes the lesson is as simple as acknowledging the patient in the room.
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During his experience with Operation House Call, Michael Zhu Chen, a Harvard Medical School student, learned that doctors often ignore a patient with IDD and speak directly to their caregiver.
“Whether they’re verbal or non-verbal or whether they can respond to questions in a fast way, or whether they need more time, ultimately they’re human beings and human beings are people who should be respected, particularly if they are the patient who the appointment is for,” Chen told The Nation’s Health.
Establishing that level of comfort is crucial, according to Shane Janick, MPH, executive director of The Arc of Philadelphia. Through SpArc, The Arc of Philadelphia’s affiliated home community-based service provider, health professional students spend at least two hours with participants in an adult day program administering lifestyle questionnaires on health behaviors and observing a health screening.
Students can help patients navigate the screening and get follow-up care. For example, if a patient reports not being able to hear out of one ear, a student will use that as a prompt and remind them to bring it up the next time they see a doctor.
“We’re trying to build up those self-advocacy skills about managing one’s own health care for those patients,” Janick told The Nation’s Health.
Janick tells students about a 2021 Health Affairs study that found only about 41% of physicians were confident about their ability to give the same quality of care to people with disabilities as to patients who do not have them.
The statistic concerns Julianna Tolotta, a Thomas Jefferson University medical student who worked with fellow students at her school’s American Academy of Developmental Medicine and Dentistry chapter to partner with SpArc in 2023.
“Jefferson does teach about disabilities, and they do their best to incorporate it into our academic curriculum, but there’s nothing like working with people who have disabilities and learning skills firsthand,” Tolotta told The Nation’s Health.
“There’s nothing like working with people who have disabilities and learning skills firsthand.”
— Julianna Tolotta
For schools that are looking to develop their own curriculum, the Alliance for Disability in Health Care Education promotes a framework based on six core competencies, which covers areas such as clinical care over the lifespan and interdisciplinary care teams.
Bannister teaches a University of Oklahoma Health Sciences course where students work with adults with IDD who pose as patients. Throughout the course, students work to respect patients’ choices while working with classmates from different disciplines to create a care plan.
“People say it really makes them think about listening to the patient and talking to the patient,” said Bannister, academic programs coordinator for the university’s Center for Learning and Leadership. “We also have people saying that their attitudes shift after the simulation and they see how people with intellectual and developmental disabilities can make health care decisions, but they may need additional supports.”
Thanks to programs such as those offered through The Arc, health students are learning how to care for people with IDD.
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While experiential learning is essential, the health care system does not make it easy for recent graduates to help people with IDD, said Vanessa Rastovic, JD, disability health policy director for Achieva’s Disability Health Care Initiative. Achieva provides services, advocacy and resources for people with disabilities in Pennsylvania.
Many people with IDD are covered by Medicaid, and physicians often find they receive low reimbursement for their care, she said.
“In Pennsylvania, I know we do have a lot of difficulties and problems and a backlog of credentialing public health professionals to take public insurance,” Rastovic told The Nation’s Health. “I’m sure that a lot of states have similar problems. So providers end up running headlong into a lot of bureaucratic red tape and low reimbursement rates. We’re just not doing a good job supporting the health care professionals who want to do this.”
Advocates are calling on the Health Resources and Services Administration to designate people with IDD as a “medically underserved population,” which Rastovic said would provide additional federal health care dollars to not only reimburse health care providers, but also train them in care for patients with IDD.
“Downstream, it could do a lot to reduce waiting times and make more practices inclusive,” she said.
Maura Sullivan, Operation House Call’s program director, said she is encouraged by some recent progress, such as the Commission on Dental Accreditation requiring all dental schools to train students on treating patients with IDD as of 2020, and a National Institutes of Health designation of people with disabilities as a population with health disparities in 2023.
“We’re hoping to see that medical schools maybe follow that lead and put in some required education,” Sullivan told The Nation’s Health. “Most of the students I meet now, they haven’t had exposure.”
For Sullivan, a mother of two children with autism, it is imperative that all health professional students receive training and learn directly from people with IDD.
“When you have responsive medical doctors and nurses, you don’t feel alone,” Sullivan said. “And even if they don’t know exactly what’s going on with your kid, just knowing that they care, that they’re listening, that they want you to communicate, that makes such a difference.”
For more information, visit www.operationhousecall.com.
- Copyright The Nation’s Health, American Public Health Association
