Having a good relationship with your doctor, dentist, psychiatrist, therapist or other healthcare professionals not only makes healthcare appointments easier, but can actually improve health outcomes.
People with disabilities, like everyone, need healthcare professionals they can trust. In addition, people with disabilities may require special accommodations or have complex medical issues.
However, not all healthcare professionals have the confidence or training to treat people with disabilities. Negative attitudes and prejudicial beliefs about people with disabilities are prevalent and healthcare professionals are not immune to these biases.
PHAN organizers have spoken with over two hundred people with disabilities living in rural PA and over two hundred rural healthcare professionals as part of the Rural Healthcare Access Project, an initiative by PHAN funded by the PA Developmental Disabilities Council to improve access to healthcare for people with disabilities living in rural PA. Read our full report here.
Through these conversations, PHAN learned that while many healthcare professionals are effectively treating patients with disabilities, many others have a lot to learn.
Although plenty of good healthcare professionals are out there, even one bad experience can make someone unwilling to get treatment in the future, adversely affect their health, or, in extreme cases, even threaten their life. People with disabilities and family members we interviewed reported instances where people with disabilities were ignored, misdiagnosed, not given enough time and attention to thoroughly address their medical issues, or even denied life-saving care because of their disability.
Issues reported include:
- Doctors, dentists, and psychiatrists being unwilling to see patients with disabilities or treating them superficially
- Lack of a wheelchair ramp or other issues with building accessibility
- Overbooking, resulting in long periods in the waiting area
- Rudeness, intolerance, dismissiveness, disrespect
- Not listening to the patient or caregivers
- Staff not knowing how to safely lift or move a patient
- Lack of sign language interpretation or assistive communication devices
- Incorrectly diagnosing physical health issues as behavioral health issues or vice versa
- Lack of behavioral support during inpatient stays
- Prematurely discharging patients with behavioral health needs
- Viewing the lives of patients with disabilities disabled patients as less worth saving than the non-disabled, not implementing lifesaving care to the same level that they would with a non-disabled patient
Challenges for Deaf Individuals at Healthcare Appointments
We spoke with a social worker who is deaf about the various challenges faced by deaf people when accessing healthcare.
“There are a lot of misconceptions as to what our needs are,” she said. Many deaf people can speak for themselves and lip read while others rely on sign language interpretation.
It is often challenging to obtain sign language interpretation in a healthcare setting. Larger hospital systems are more likely to have an interpreter on site than smaller practices.
Three years ago, the person we spoke to had surgery. The hospital staff brought in a Video Remote Interpreting device (VRI)–a teleconferencing device that connects to a sign language interpreter. However, after the VRI was set up they had to wait 20 mins for an interpreter to become available. During that time, her surgeon was called into emergency surgery and her surgery had to be postponed.
She went on to describe another instance in which her son was placed in the Newborn Intensive Care Unit for multiple days after birth. During this period, an interpreter was only provided for 2 hours each day and these windows never synched up with the doctor’s schedule. As a result, she was unable to communicate with the doctor about the health of her newborn.
In another example, while in the waiting room for a mammogram, she was unable to hear the nurse calling her back–even though she had told the front desk about her disability. She only noticed that she had been passed over when the person who had checked in after her was called back. No sign language interpretation was provided and she had to explain her needs during the mammogram and repeat it all again during an ultrasound directly after. Fortunately she was given a clean bill of health.
“But if they had found something, how would they have conveyed that information to me?”
She observed that many people don’t know they have rights under the Americans with Disabilities Act and even fewer know how to advocate for themselves when those rights are denied. Hospitals are required by law to provide interpretation and other accommodations for people with disabilities, but when presented with a deaf patient they are often unprepared to make these accommodations and behave as if the patient is asking for something unreasonable.
To improve the way hospitals and other healthcare sites serve deaf people, she noted that some hospitals have language policy procedures that detail when and how sign language interpretation, translation to and from English to other languages, and other needs around language are to be handled by the institution. Institutions with these policies generally perform better in terms of accessibility–provided that the staff are trained and versed in them.
By contrast, people we spoke to gave their healthcare professionals high praise when they took time and listened to them. Unless an individual is going in for disability-specific specialty care, it is helpful but not necessary for a healthcare professional to have clinical knowledge of the patient’s specific disability. If someone is going in for a generic healthcare visit, such as a checkup or dental appointment, it is usually enough for a professional to ask questions, take time with the patient, learn from feedback and adjust their approach. In other words, a professional’s competency in treating people with disabilities is first and foremost an extension of a patient-centered approach in general. However, as we’ve seen, many professionals don’t perform well in this area.
Furthermore, doctors who are known to be good at treating patients with disabilities are sought after and often have long wait lists–if they are accepting new patients at all. Another complicating factor is that Medicaid (Access Card) is the most common type of insurance held by people with disabilities, and not every healthcare professional accepts Medicaid. This is an even more acute problem in rural PA, where there are fewer healthcare professionals and choice is limited.
The amount of time a healthcare professional spends with a patient, whether disabled or non-disabled, affects quality of care. However, healthcare professionals are often under pressure to see as many patients as possible within a given time frame.
This publication is supported by a grant from the Pennsylvania Developmental Disabilities Council; in part by grant number 2001PASCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.