Improving Resources

Primary care providers are essential to improving health care for people with developmental disabilities (DD). Their contribution is vital for disease prevention, early detection, and appropriate management¹.

They help to assess the need for referral to specialized and interdisciplinary health services when these are available, and they provide continuity and coordination of care¹.

There are a number of tools and resources that can help family physicians ensure their patients with developmental disabilities receive the best information and care related to their aging experience.

The Consensus Guidelines for Primary Health Care of Adults with Developmental Disabilities provide practical Canadian guidelines for primary health care providers based on the best available evidence for addressing health issues in adults with developmental disabilities (DD). These guidelines synthesize general, physical, behavioural, and mental health issues of adults with DD that primary care providers should be aware of, and they present recommendations for screening and management based on current knowledge that practitioners can apply. These guidelines remain, to our knowledge, the only comprehensive guidelines for the primary care of adults with DD in Canada. A further version is due to be published in 2018.

This section includes content and excerpts from a peer-reviewed journal article from titled: Primary care of adults with developmental disabilities; Canadian consensus guidelines¹.

Using the Guidelines

The Canadian Consensus Guidelines make practical recommendations for practice based on current knowledge to address the particular health issues of adults with DD.

• These guidelines emphasize involving caregivers, adapting procedures when appropriate, and seeking input from a range of health professionals when available. Ethical care is also emphasized.
• The guidelines are formulated within an ethical framework that pays attention to issues such as informed consent and the assessment of health benefits in relation to risks of harm.
• Incorporating these guidelines into practice helps to improve the health of adults with DD and to minimize disparities in health and health care between adults with DD and those in the general population.

Links and Downloads

Download a Full PDF of the guidelines.  A PowerPoint summary is available here.

Additional links:

• Developmental Disabilities Guidelines Introduction
• Developmental Disabilities Guidelines Summary
• Developmental Disabilities Guidelines Summary pg. 2
• Developmental Disabilities Guidelines Behaviour and Mental Health

The BC Patient-Centred Care Framework provides a consistent definition and approach for patient-centred care to be used in British Columbia. It is the responsibility of all partners in the health care system to embrace the patient-centered care approach and take action to achieve the vision of patient-centered care

Four core principles for patient-centred care provide a foundation for the pursuit of patient-centred-care in the province:

Dignity and Respect: This principle speaks to the need for active listening to patients and families and to honouring their choices and decisions. This is done through incorporating the patients and families values, beliefs and cultural norms into care plans and care delivery.

Information Sharing: Participative communication of timely, accurate and complete information with patients and families on what decisions are to be made, and validating with the patients and families what they have heard and understood, is the basis of this principle. This leads to supporting an informed decision by the patients and families.

Participation: Patients and families are encouraged and supported in participating in care and informed decision making at the level at which they feel comfortable and of their own choice. The level of participation is determined by the spectrum of engagement outlined by the International Association of Public Participation (IAP2). The spectrum of engagement range is inform, consult, involve, collaborate and empower.

Collaboration: Patients and families are provided meaningful opportunities to engage with care providers and leaders in the continuum of quality improvement, policy and program development, implementation and evaluation. This includes the potential for patient/family engagement in health care facility design, health care system redesign, professional education and the delivery of care.

Health Care Access Research and Developmental Disabilities (H-CARDD), a research program in Ontario, has been studying the health care of adults with developmental disabilities in the province since 2010.

H-CARDD aims to improve health care for individuals with developmental disabilities by sharing different tools and information we and others have created to help those with disabilities get the best health care they can.

H-CARDD developed two toolkits to assist clinicians and primary care and emergency care providers to improve their practices with patients with developmental disabilities. These toolkits include clinician tip sheets, patient handouts‎, information on local resources, and step by step instructions on how to implement changes.

• Primary Care Toolkit
• Emergency Department Toolkit

The health care resources section of the H-CARDD website includes more tools and information for people with developmental disabilities and caregivers, as well as clinicians and service providers. These tools can help communicating important information in a health care setting. They also include information about health and developmental disabilities, and provide best practice tips for health care providers.