Closing the Disparity Gap for Disabled Patients

By Matt Phillion

A new proposed rule by the U.S. Department of Health and Human Services (HHS) is intended to battle healthcare discrimination for disabled Americans. This update in focus has highlighted the need for improvements in training to enable better outcomes for individuals with intellectual and developmental disabilities.

The proposed rule, which comes from the HHS Office of Civil Rights (OCR), would prohibit discrimination based on disability—and while the implications of this rule should ensure better outcomes for the over 42 million Americans with disabilities, the industry must still content with inherent biases which can often lead to health disparities for people with disabilities.

The OCR’s proposed rule looks at enhancing medical and technological accessibility, as well as prohibiting the use of value assessment methods to place a lower value on life extension for individuals with disabilities to ensure that medical treatments are not based on stereotypes about these individuals.

A lack of training for proper care for patients with disabilities can often lead to incorrect assumptions about quality of life and decisions about preventive care measures. Certain screenings are performed at a lower rate for patients with disabilities for these reasons, including prostate, breast cancer, oral health, cholesterol, and colon screenings.

How can organizations prepare for this potential rule shift, and where can they identify gaps in training and education to improve care for patients with disabilities?

“What this rule is really looking to do is beef up and in many ways modernize some of the things that were in the Americans with Disabilities Act (ADA) of 1973,” says Dr. Craig Escudé, president of IntellectAbility, an organization that provides tools and training for agencies, government entities, and supporters of people with intellectual and developmental disabilities to improve care. “We know people with disabilities face significant health disparities and overall poorer outcomes.”

Lower rates of preventive screenings is just one of these barriers to care, Escudé says.

“It’s harder for these patients to access care from clinicians who really understand their needs, especially when it comes to intellectual and developmental disabilities,” he says. “As a physician myself, I was not trained on how to provide healthcare for people with intellectual and developmental disabilities, and that’s still very prevalent. Clinicians must understand and be trained on how to provide good care for these patients.”

Even today, physical access can be a challenge for patients with disabilities. Being able to get into the doctor’s office, or basic diagnostic steps like weighing a patient with mobility issues or helping them onto an exam table can be overlooked until you’re in the moment, and this is where additional training and insight is so necessary.

“One of the things the pandemic brought to everyone’s attention was the many health disparities for people with disabilities, intellectual and developmental in particular. We saw people who were deprioritized from life-saving measures based solely on the fact they have a disability,” says Escudé. “People saw them as having a lower quality of life because of their disability and that goes against the ADA. It’s something those of us who have worked in this field have always seen, but because this crisis happened on a national level it really brought it to the attention of the larger public in a way we haven’t seen before.”

Where to focus improvements

Escudé notes that when looking for areas to improve, the industry should look at ways to improve health equity for patients with intellectual and developmental disabilities in general.

“Better education for providers of all types—there are studies that show that a very low percentage of medical schools really have a formal curriculum about caring for people with disabilities,” he says.

Providers appear to aware of where this lack of comfort in their practice exists: a study from HealthAffairs found that only 41% of physicians were “very confident” about their ability to provide the same quality of care for patients with disability, 56% strongly agreed that they welcomed patients with disabilities into their practices, and 18% strongly agreed that the healthcare system often treats these patients unfairly.

“These studies show that the majority of clinicians feel they are unable to deliver the same level of healthcare to people with disabilities to those without, and when you have these types of mindsets in healthcare it’s very easy to see why we have disparities,” Escudé says. “Training is the most important thing to do. I practice family medicine—if you came to me for cataract surgery, you’d go blind. I’m not trained for cataract surgery! It’s not a matter of not having a desire to learn, but a need to do a better job of training clinicians to provide care to millions of people in this world with disabilities.”

Training requires a two-pronged approach: addressing both those currently in practice, and those who are in training now.

“if we only start by implementing training in medical schools, we’re looking at years and years before we have a large number of clinicians who are competent to meet these needs,” says Escudé. “We also need to look at how we train clinicians out in practice now, to be ablet o get them the skills to provide fundamental care for these populations.”

It isn’t limited to just physicians, Escudé notes. Nurses, physical therapists, nurse practitioners, physician’s assistants, support staff can all learn from these fundamental principles. Still, urging medical professionals of all types to expand their education in this area is pivotal.

“Clinicians don’t know what they don’t know, and they don’t’ know they need to learn this information—and may not recognize that this type of training will enhance their clinical skillsets in other areas of medicine including caring for people with cognitive changes such as dementia, people who are aging, and those with a traumatic brain injury. Any of us can become disabled, temporarily or permanently,” says Escudé. “Learning how to provide good healthcare for people with intellectual disabilities will enhance care for all.”

Escudé points to several organizations doing excellent work in this area: the American Academy of Developmental Medicine and Dentistry, a group of physicians and dentists working together to improve healthcare education; the Developmental Disability Nurses Association, which trains and certifies nurses in this area; and a newer organization called the Institute of Exceptional Care, which recently developed a roadmap of steps clinicians can take to build skills and confidence when working with this patient group.

“I’ve been practicing in this field for 25 years, and when I first started out, I couldn’t find information about how to provide care for people with disabilities,” he says. “I learned through people who were working in a facility that worked with patients with intellectual or developmental disabilities, and that was how knowledge was transferred.”

It’s been refreshing to see an uptick in interest, understanding, and even funding for this kind of education for healthcare professionals in recent years, he says.

The impact of diagnostic overshadowing

In particular, discussion about diagnostic overshadowing is something professionals can and should address when treating this patient population, Escudé highlights.

“It’s very common, where a clinician will say that a particular set of symptoms a person might exhibit are related to that person’s overall diagnosis, rather than looking at a treatable underlying cause,” he says. “A person who does not use words to communicate might be showing aggressive behavior towards others or are hitting themselves. So often, to an untrained clinician, that looks like something that ‘just happens’ with people with intellectual or developmental disabilities, so they put them on psychotropic medication to control that behavior.”

Meanwhile, that patient is in fact experiencing pain. It might be from a dental abscess, gall stones, any number of sources of pain that are not immediately obvious.

“Nobody bothers to look, and that condition gets worse and worse, so the person ends up in the hospital or even dies from it,” says Escudé.

This is common enough that the Joint Commission published a Sentinel Event Alert to warn practitioners about it: Sentinel Event Alert 65, Diagnostic overshadowing among groups experiencing health disparities.

“The Joint Commission felt this was important enough to warn people and health systems about and raise awareness about what they can do to prevent it,” says Escudé. “Even with that, many doctors who understand the concept may still lack the skillset to properly evaluate these patients.”

With more focus on closing the disparity gap for patients with intellectual or developmental disabilities—and other disabilities as well—the industry has a chance to create better outcomes for all patients.

“My gold standard is that any person with or without a disability can present themselves to any doctor’s office or hospital system and be guaranteed they will receive a basic level of competent and compassionate healthcare,” says Escudé. “That’s where we need to be and what we’re working toward: true health equity, including for people with disabilities.”

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.