Monday, May 21, 2018

Tips for caring for persons with developmental disabilities

- Jennifer Middleton, MD, MPH

Two articles in the current issue of AFP, along with other recent primary care literature, contain a wealth of practical tips and techniques for successfully - and respectfully - caring for persons with developmental disabilities.

"Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care" provides an overview of office accessibility pointers, communication techniques, approaches to preventive care and acute illnesses, and end-of-life planning. It also includes a discussion on the medical versus neurodiversity models of diversity, asserting that accepting patients as they are is preferable to trying to "normalize" them:
The goal of health care for patients with developmental disabilities is to improve their well-being, function, and participation in family and community. It is not always necessary or desirable to try to change a person's traits and characteristics to make them appear or behave more normally. 
Along those lines, the patient in this issue's Close-up, "Persons with Disabilities: I'm the Expert About the Body," says, "[T]here are many things they cannot know about me just by observing the way I look or the way I communicate." Avoiding the temptation to make assumptions can go a long way toward communicating respect. This website, quoted within the feature article, includes brief video examples of engaging with patients with no or limited speaking ability. An AFP Curbside Consultation from 2017 reinforces the importance of grounding medical decision making within the patient's definition of quality of life - which may not always align with physicians' assumptions.

Improving our ability to care for persons with developmental disabilities is critically important to reducing health care disparities between them and the non-disabled population. A 2017 statewide study across Ohio found that, compared with persons with no disability, persons with a disability (and/or their supporters) were more likely to report their health status as being "fair" or "poor," had more hospital and Emergency Department (ED) visits, and had more problems "getting needed care." Disabled persons reported more frequent "delayed treatment[s]," problem[s] getting care," and "problem[s] seeing a specialist." A study from the United Kingdom examining hospital admissions found similarly: hospitalizations were double that of non-disabled persons, even after controlling for "higher levels of comorbidity." The authors of both studies call for further studies to explore solutions to minimize these disparities; improving communication between persons with developmental disabilities and physicians, as detailed in the AFP articles above, may be an important first step.

These AFP articles also include a collection of online toolkits and resources on "Supported Decision Making." You can read more in the AFP By Topic on Care of Special Populations. Since family physicians often care for supporters, too, the CDC has tips for caregivers of persons with a disability, and so does FamilyDoctor.org.

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