“We often rely on our patients to seek help when they need it. But for several reasons, this could be a harmful assumption for our patients with IDD. If most doctors aren’t aware of the importance of a proactive health check for patients with IDD, we can’t expect that our patients or their caregivers would know and be able to advocate for this.” – Alicia Thatcher , MD
The Canadian guidelines for primary care of adults with intellectual and developmental disabilities were updated in 2018 to reflect the latest evidence in healthcare for adults with intellectual and developmental disabilities (IDD) . One of the main recommendations in the guidelines is that of periodic health checks.
Health checks are comprehensive health reviews that family physicians can use with patients to provide additional preventative and proactive care. They can include a physical examination,
prevention or screening. Health checks are particularly beneficial to adults with IDD.
Barriers and Challenges
“The healthcare environment was not built for [people with IDD]. It’s very much a give and take of information. [The communication] is expected to be verbal, but there’s a lot of nonverbal communication that goes on when you’re working with people with IDD. The healthcare environment tends to be noisy. You can have a screaming baby next door or fluorescent lights blasting down on them. Those things can make them very uncomfortable and those settings can be painful.” –Karen Neil, MD
As a population, adults with IDD experience systemic inequities while trying to access healthcare services, such as difficulty navigating the healthcare system, social barriers and communication challenges. Specifically, they might not be able to communicate the specific help needed or the details of their current health problem.
Compared with the general population, adults with IDD are also more likely to live in poverty, which produces additional health risks such as diabetes and compromised mental health. As a result, adults with IDD experience varying yet increased rates of mortality and morbidity and hospital emergency care visits. The COVID-19 pandemic has likely increased these rates due to decreased allowance of in-person visits.
Family physicians experience challenges with providing care to adults with IDD, including inadequate exposure to educational content specific to adults with IDD and a lack of systematic support for numerous practices, such as gathering patient information.
Health checks are systemic resolutions that directly address inequities and systemic challenges adults with IDD experience regarding access and support.
Family physicians support in identifying undiagnosed conditions. While health checks may require more time to complete for adults with IDD than usual, they encourage a person-centred approach. In this respect, a health check should be understood as a process to complete over several appointments instead of a simple annual checkup.
The Health Check Tool
A Comprehensive Health Assessment of Adults with Intellectual and Developmental Disabilities ( also called IDD Health Check) is a point-of-care tool for primary care providers to implement the health check for adults with IDD. The tool makes it possible for primary care providers to identify and consider health issues while performing a comprehensive health check.
tool includes practical information, including a point-of-care form, tips and links to additional
tools. It provides supplementary information based on the experiences of family doctors
and practice tips from physicians with experience providing care to adults with IDD.
Despite the challenges they face, family physicians are in the ideal position to perform health checks for adults with IDD. According to evidence from Ontario, adults with IDD see a family physician with the same frequency as those in the general population. Family physicians, then, are in a unique position to strengthen such a level of access. Additionally, aspects of family medicine, such as a focus on proactive care and the continuity of care, support a person-centred care approach that is accessible, reliable and thorough.
“There’s a patient who’s in their 60s and had multiple non-specific health issues that were difficult to connect and figure out what was underlying them. Their physical health just seemed to be deteriorating. A comprehensive health check revealed a number of issues, including significant polypharmacy as a major contributor…
So, we ordered a chromosomal microarray which revealed a rare genetic syndrome that actually explained many of the clinical concerns we were seeing. The syndrome was included in the list of the syndrome-specific Health Watch Tables available on the Developmental Disabilities Primary Care Program website. And so, we were able to use that table to guide our next investigations.
We also decreased or discontinued some of the medications after doing a medication review and those were contributing to their worsening health. Following the guidelines and the IDD Health Check tool made it less overwhelming so we could just go through that and address the whole person and the whole context...” –Alicia Thatcher , MD
Health Check, family physicians can gain baseline health information to inform further assessments or access
additional support. While health checks are not recommended for the general population, they are recommended for adults with IDD due to certain risk factors, specific needs and lived experiences.
Health checks are essential for providing person-centred care to adults with IDD. They allow healthcare providers to enhance the patient-healthcare provider relationship and reduce systemic barriers that adults with IDD experience. Family physicians are specifically well-situated to perform health checks due to aspects of their practice that focus on proactive and preventative care.
While there may be systemic challenges in providing care to adults with IDD, the IDD Health Check tool helps address those challenges with practice tips and tools. It supports an integrated approach to managing patients with complex health issues and needs.