CanFASD: Primary Care of Adults with Intellectual and Developmental Disabilities


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

Understanding FASD and Cognitive Disabilities

Examining how certain behaviours can be caused by cognitive deficits can show how misunderstood individuals with FASD can be. We often say that behaviours are a symptom of the poor fit between individuals and their environment. By learning about the effects of cognitive disabilities we can see how a lot of behaviours are misinterpreted as being willful or disobedient when they are actually a direct result of FASD.


Employment Opportunity: Skills Society


Supporting the citizenship of people with disabilities


SKILLS is a progressive community-based agency which provides a range of supports to people with disabilities.

Due to an expansion of services, we are currently looking for 9 Community Support Workers II to join our team in Community Supports Outreach.

These are permanent full-time positions offering 40hrs/wk supporting people who live in Edmonton’s inner city neighbourhoods. There is some flexibility with hours and days worked depending on the support needs. The majority of hours will be Monday to Friday during the day, but some evening and or weekend hours are possible.

Successful applicants will have a combination of education and experience along with knowledge and background in community inclusion, person-centred planning and advocacy. Experience supporting individuals with Fetal Alcohol Spectrum Disorder and addictions is a must. Experience working in the inner city along with an ability to work independently and think on your feet would be definite assets.

A vehicle is required along with a Driver’s Abstract and adequate insurance. A current (within 6 months of date of issue) Criminal Record Check is also required.

Starting wage range is $21.00 to $23.64 per hour and is commensurate with education and experience.

Please forward resumes along with a covering letter, quoting ref. #OR18 to the Human Resources Manager.

Skills Society

#203, 10408 – 124 Street NW

Edmonton, AB  T5N 1R5

Fax: 780-482-6395


In The News: No option but indeterminate sentence for dangerous offender with FASD


There is little doubt a 33-year-old man’s inability to successfully deal with his violent behaviour is related to his FASD diagnosis.

But while a Regina Court of Queen’s Bench judge recognized the struggles faced by Dallas Dwayne Whitebird, he determined the safety of the public meant nothing but an indeterminate prison sentence could mitigate the risk.

Whitebird’s dangerous offender (DO) hearing wrapped up earlier this week with a decision from Justice Fred Kovach, declaring the man a DO and handing down the sentence.

But the judge didn’t do so lightly.

“I acknowledge and understand that he is a violent individual, but I am also mindful that but for his criminal behaviour, this individual would likely be residing in an adult group home,” Kovach said. “He would be unable to manage day-to-day life without support and guidance. He does not have the capacity to care for himself within the framework of our society, and society has failed him throughout his life.”

Whitebird was convicted back in September 2012 of aggravated assault, but was not sentenced until this week. The offence, committed in the summer of 2011, involved an intoxicated Whitebird punching his older half-sister. She hit a door hard enough to smash her jaw — an injury that caused a serious break from which she never fully recovered before her death a few years ago.

Whitebird was far from a stranger to violence, having spent the largest part of his life in custody since age 14. Court heard his record contains close to 15 entries for violence and firearms offences.

Kovach said Whitebird was in custody for his sister’s assault when he earned a seven-year sentence for slashing the throat of a fellow inmate.

That history left no question in the judge’s mind Whitebird has demonstrated the pattern of repetitive violent behaviour required for a DO designation.

The product of what Kovach described as a “chaotic” childhood, Whitebird was exposed to substance abuse and violence from an early age. His mother a residential school survivor, she developed a drinking problem and struggled as a parent.

Whitebird spent time in various foster homes and eventually, at age 12, started drinking and using marijuana.

Since diagnosed with FASD, Whitebird is considered “cognitively low-functioning” and lacks impulse control. His resulting difficulty with programming intended to curb his violent behaviour was chief among reasons Kovach decided an indeterminate sentence was necessary. Two forensic psychologists who assessed Whitebird found it unlikely he would be able to grasp and retain the material he’d need to in order to change.

One of the psychologists believed the use of the Regional Psychiatric Centre as a home institution for Whitebird could help — a finding with which Kovach agreed. The judge made a recommendation to Correctional Service Canada (CSC) that Whitebird be placed in that institution on a permanent basis — or at least until he is able to make use of lessons learned in programming so as to safely release him.

“The CSC has a responsibility to protect the public from offenders, but it cannot be blind to the need for rehabilitation and support for offenders,” Kovach said. “Whitebird represents a failure by CSC to accommodate the needs of an individual with severe cognitive impairments.”

Even if he is eventually released, Kovach noted Whitebird’s cognitive issues mean he will require community assistance for the rest of his life.

Retrieved from

Truth & Reconciliation Call to Action #34: A Framework for Action

The FASD Prevention Conversation Project

The Truth and Reconciliation Commission of Canada’s (TRC) Call to Action 34 calls on national, provincial and territorial governments to make changes to the criminal justice system to improve outcomes for offenders with Fetal Alcohol Spectrum Disorder (FASD).

Truth & Reconciliation Call to Action #34: A Framework for Action provides background on the complex issue of individuals with FASD in the justice system with a goal to take up the TRC’s Call to Action to help improve outcomes for individuals with FASD. As well, it acknowledges the ongoing impacts of the Indian Residential School (IRS) system and provides mechanisms to bring about necessary changes in the areas of education, access, training, justice, evaluation and community supports.

The Framework for Action is part ofCanFASD’s ongoing commitment to take up the Calls to Action and to be actively involved in work and partnerships that focus on reconciliation and improving the lives…

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Alberta Community and Social Services: PDD Community Conversations

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The community-appointed panel leading the Persons with Developmental Disabilities (PDD) program review are hosting community conversations across Alberta.

The letter above (please click on image) or here, provides some more details about upcoming opportunities to meet with the panel and provide feedback into the PDD review in a community near you.

For more information about the review panel and upcoming community conversation sessions, visit the PDD Program Review website.