Our last post, Treating People With Disabilities: What Healthcare Professionals Should Know, covered how healthcare professionals’ level of comfort and expertise treating patients with disabilities can affect quality of treatment. Now, we will discuss the importance of education for healthcare professionals and other systems change recommendations to make healthcare more accessible for people with disabilities.
Healthcare professionals typically do not receive disability competence education in medical school or as part of their ongoing education. One healthcare professional we interviewed told us that health systems do a poor job training their staff. To get the most time with patients from their limited staff hours, large health systems rarely provide dedicated training time. Instead, they provide electronic training modules, typically a deck of slides with a quiz, which staff must complete during a free moment. Many staff members click through the presentation, learning little from the material.
PA Health Access Network (PHAN) Organizes Training for Healthcare Professionals
In the winter of 2021, PHAN partnered with the Perry County Health Coalition, the Ohio State University Center for Excellence in Developmental Disability, and the Central PA Center for Independent Living to host trainings in disability competency for healthcare professionals.
Dr. Susan Havercamp, professor of Psychiatry and Behavioral Health, identified the skills and knowledge healthcare professionals should have to effectively treat people with disabilities (see this page Core Competencies on Disability for Health Care Education). The trainings included guest speakers with lived experience.
Tammie S., who is blind, described a typical healthcare visit and what she needs from healthcare staff. Tammie explained how and when she needs assistance getting to the exam room, getting on and off the table, and checking out. She addressed healthcare professionals in attendance, asking them to tell her and other blind patients what they will do before doing it and to address her directly if she has support staff with her. Tammie also prefers to be spoken to at a typical volume. She requests that information be told to her verbally, put in braille or an audio format–and to recap instructions at the end of the visit.
Cheryl G. discussed a recent incident where her pain management clinic refused to give her a telehealth appointment to discuss a treatment plan for severe headaches she described as “debilitating”. Cheryl also had limited mobility due to a recent knee replacement. Nevertheless, Cheryl was forced to drive an hour and a half for a 5-minute appointment, rather than see her doctor using telehealth remotely from home.
Guest speaker, Mary Bachman, shared her experiences getting care for her son Elijah, who is six and on the autism spectrum. She described arguing with the nurse to turn off the fluorescent lights in the exam room because they were hard for Elijah to tolerate. She also described waiting up to an hour to see the doctor, which Elijah found very difficult. Mary is a physician’s assistant and recommends that healthcare staff put a flag in the chart of patients who find waiting difficult so they can be seen faster. Mary stated, “I think the key is getting to know that particular client and what works and what doesn’t work.” She also described the difficulties getting Elijah diagnosed when he began to show signs of being on the spectrum. She recommends that pediatricians and general practice doctors educate themselves about autism both so they can identify the signs of autism early in a child’s development and to better understand the needs of patients on the spectrum.
In conclusion, we believe the lack of disability knowledge by healthcare professionals represents a failure of the education and healthcare system. While there have been many initiatives to train individual providers, the problem requires broad solutions in the form of systems and policy changes and enforcement of existing policies around accessibility and disability competence training.
The presence of assistive communication devices and accessible formats for printed materials is mandated by the Americans With Disabilities Act (see this page An Overview of the Americans with Disabilities Act). The ADA also states that healthcare facilities must make reasonable accommodations to make their facilities accessible to people with disabilities, and that a healthcare professional cannot refuse to treat someone based on their disability. In addition, all health plans that provide Medicaid services in Pennsylvania (Medicaid being the most common type of insurance for people with disabilities) “must demonstrate that its Provider Network is knowledgeable and experienced in treating Members with Special Needs” (HealthChoices Agreement p. 120). However, these requirements are not always enforced. Many doctors and patients with disabilities are unaware that these protections exist.
For these protections to be meaningful, healthcare professionals need training on their obligations under the ADA. At the same time, patients with disabilities must know their rights and how to lodge a complaint when those rights are not upheld. Disability competency training should be a salient part of education in medical schools and as ongoing education for healthcare professionals. Lastly, the amount of time a healthcare professional is able to spend with a patient has an impact on quality of care. This is especially relevant for patients that require accommodations or have complex health needs. We should explore policies that allow healthcare professionals to devote sufficient time to each of their patients.
This publication is funded by the Pennsylvania Developmental Disabilities Council.