Intellectual and developmental disabilities (IDD) are a set of disorders that cause challenges in general cognitive functioning and adaptive abilities, such as problem-solving, learning, reasoning, and social and practical skills. Signs of IDD appear before the age of 18, can differ in severity and complexity for different people, and may change across the lifespan. IDD is a general term that can include specific disabilities like autism spectrum disorder, FASD, and genetic disorders (e.g., Down syndrome), but sometimes the cause of IDD is unknown.

People with IDD experience health conditions that are unique, and in many cases, these problems are preventable. New Canadian guidelines for the primary care of adults with IDD have recently been published (updated from 2011).

Health care providers promote the well-being of those with IDD and intervene when health issues arise. The 2018 guidelines recommend a standard of care for adults with IDD, who often require individualized interventions to support their needs. The focus of the guidelines is on addressing the intellectual, conceptual, and social challenges faced by those with IDD.

Purpose of the Guidelines

The updated guidelines are intended to provide general information to health care providers on health disorders and care standards for individuals with IDD. Because individuals with IDD vary in their level of health and response to treatment, the guidelines should be interpreted subjectively when applied to each person.

The main emphases of the guidelines are:

• Primary prevention: avoiding new health issues
• Secondary prevention: recognizing and diagnosing health disorders in order to implement appropriate interventions
• Tertiary prevention: monitoring the chronic health conditions in order to avoid further complications

Summary of the Guidelines

The guidelines outline 32 specific recommendations, some of which are updates from previous guidelines, and others that are new. These recommendations are summarized below:

• Adopt a person-centred approach to care.
• Effective communication is essential.
• Consider the individual’s capacity for decision-making, and engage the individual and their family in decision-making when possible.
• Address the needs of families and caregivers
• Establish integrated and interprofessional health care teams
• Implement periodic comprehensive health assessments:
  • Seek to determine the cause of IDD
  • Refer for cognitive and adaptive testing or re-testing if needed
  • Assess for pain and distress
  • Regularly review medication use
  • Assess for indicators of abuse, exploitation, or neglect and refer to services where necessary
  • Proactively address life transitions and engage supports.
• Attend to physical health:
  • Monitor weight, diet, and physical activity
  • Screen and assess for visual and hearing impairments, oral disease, cardiovascular disease, respiratory disorders, gastrointestinal problems, gynecologic health (for women), neuromuscular and skeletal disorders, epilepsy, endocrine disorders, infectious diseases, cancer, and sleep problems
  • Refer and consult wherever necessary
• Address mental health needs:
  • Consider the individual’s psycho-social context and mental well-being
  • Help to manage behaviours that challenge
  • Screen for psychiatric disorders and consult when needed
  • Connect individuals with appropriate interventions and therapies, and monitor medication use and other therapeutic intervention
  • Help to manage behavioural crises
  • Screen and address problems with addictions
  • Look for signs of dementia
  • Refer and consult wherever necessary.

Take-Home Message:
Individuals with IDD vary widely in their level of functioning and strengths and abilities. Their individual presentation and the extent of their disability will guide the type of support they need. Family and community support are crucial to the well-being of individuals with IDD, and guidance from health care professionals on how to access resources and develop coping strategies for everyday life is essential. It is important that health care professionals are educated on the most current information and practices to effectively intervene and support those with IDD.

The Primary Care of Adults with Intellectual and Developmental Disabilities: 2018 Canadian Consensus Guidelines can be accessed here.

For more information:

Authors: William F. Sullivan, Heidi Diepstra, John Heng, Shara Ally, Elspeth Bradley, Ian Casson, et al.

Journal: Canadian Family Physician