Research ArticlePractice

Primary care of adults with intellectual and developmental disabilities

2018 Canadian consensus guidelines

William F. Sullivan, Heidi Diepstra, John Heng, Shara Ally, Elspeth Bradley, Ian Casson, Brian Hennen, Maureen Kelly, Marika Korossy, Karen McNeil, Dara Abells, Khush Amaria, Kerry Boyd, Meg Gemmill, Elizabeth Grier, Natalie Kennie-Kaulbach, Mackenzie Ketchell, Jessica Ladouceur, Amanda Lepp, Yona Lunsky, Shirley McMillan, Ullanda Niel, Samantha Sacks, Sarah Shea, Katherine Stringer, Kyle Sue and Sandra Witherbee
Canadian Family Physician April 2018; 64 (4) 254-279;

Abstract

Objective To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD).

Methods Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations.

Recommendations Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning.

Conclusion As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers.

The following guidelines for the primary care of adults with intellectual and developmental disabilities (IDD) update those previously published in Canadian Family Physician.1 In these guidelines, IDD refers to various lifelong limitations in intellectual functioning and conceptual, social, or practical skills that emerge in persons before the age of 18 years. These limitations differ in severity and type among people with IDD and can vary during a person’s lifespan. Intellectual and developmental disabilities encompass intellectual disability, developmental disability, learning disability (as used in the United Kingdom), and autism spectrum disorder.2

Adults with IDD are patients that most family physicians have in their practices. As primary care providers, family physicians play a key role in promoting the health and well-being of these patients. People with IDD often have complex health care needs and factors affecting their health that can vary in kind, manifestation, or severity from others in the community. They require approaches to care and interventions that are adapted to their needs.

The revisions in the updated guidelines are based on feedback from users of the previous guidelines and on review and discussion of current knowledge by family physicians and other health professionals experienced in the primary care of adults with IDD. The approaches to care that are outlined in these guidelines can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning. References to clinical tools and other practical resources are incorporated to facilitate implementation.

Objective and scope of the guidelines

The updated guidelines aim to help family physicians and other providers of primary care to make informed decisions with their patients with IDD and patients’ caregivers. Their focus is on health issues that are specific to adults with IDD. These tend sometimes to be overlooked because they can vary from what is encountered in other patients.

As in previous guidelines, emphasis is placed on measures to avoid occurrence of health disorders (primary prevention) and to detect disorders early for effective intervention (secondary prevention). Some new guidelines also address monitoring the health of patients who are living with chronic physical or mental health conditions to mitigate symptoms and avoid additional complications (tertiary prevention). Adults with IDD experience high rates of chronic diseases.3 They might not have the skills and support needed for self-care.

These guidelines outline standards of care for which there is a good basis in current knowledge. Other factors, however, were considered for deciding whether a proposed action is “strongly recommended” or “recommended,” including availability and use of resources. Implementing some recommendations might entail flexibility in managing resources or enabling patients and caregivers to access resources in the community to which they are entitled. The latter might involve promoting better distribution of resources in the health care and social services systems. These are competencies associated with being a health advocate, one of the CanMEDS–Family Medicine roles of family physicians identified by the College of Family Physicians of Canada.4

Rationale for revising the guidelines

At colloquia held in 2016, 45 Canadian family physicians and other health professionals who use the 2011 guidelines suggested revisions and additional topics. Studies published since 2011 also prompted a review of the previous guidelines.

Rationale for method

Our method for updating the guidelines considered international efforts to improve the quality of clinical guidelines while making adaptations for addressing the primary care of adults with IDD. The 2011 guidelines used an evidence-based medicine (EBM) framework with no separate grading of strength of recommendations. To update our guidelines, this approach was revised. We classified and profiled the types of knowledge reviewed as empirical knowledge (derived from randomized controlled trials [RCTs] and observational studies), ecosystem knowledge (population-level data from studies of prevalence, environments, and health care systems), expert knowledge (from practitioners or professional bodies proposed with or without an explicit consensus process), and experiential knowledge (patient and caregiver perspectives). These various types of knowledge were not ranked hierarchically because they offer complementary insights, each contributing a different perspective necessary for making informed clinical judgments. We distinguished the strength of recommendations using a separate grading system that considered other factors such as the proportion of benefit relative to harm, preferences and values of patients and caregivers, and the availability and use of resources. This approach was adapted from that used by the Canadian Task Force on Preventive Health Care for its guidelines.

Underlying these methodologic changes is our view that, while the EBM framework widely used to develop guidelines is helpful for many patient groups, it has some limitations when developing guidelines for certain patient groups such as people with IDD.5 The EBM framework adopts a hierarchical ranking of the quality of evidence that places RCTs at the highest level of quality of evidence and expert opinion at the lowest. This grading system is problematic in developing guidelines for primary care of people with IDD for several reasons. First, very few RCTs involve participants with IDD. Recruiting such participants is difficult and often judged to be ethically inappropriate by research ethics boards.

Second, RCT design can be used most effectively when the number of relevant variables among participants is small. People with IDD, however, are a heterogeneous group of patients with different, sometimes rare, causes of their disabilities, a range of intellectual and adaptive functioning, and multiple comorbidities. These variations often affect health outcomes or response to interventions.

Third, RCTs are not designed to investigate the sorts of holistic interventions that adults with IDD require for comprehensive primary care. In such interventions, effects often interact and cannot be studied in isolation; nor can all outcomes of such interventions be quantified.

Fourth, as Greenhalgh and colleagues have argued, there are potential biases implicit in the EBM framework that run counter to a relational, person-centred approach to care, which is valued in family medicine and in the care of people with IDD.6 Qualitative studies eliciting patient and caregiver perspectives are important in such care.

Moreover, there has been a positive shift within family medicine from approaches to care based exclusively on the medical model of disability, which focuses on patients’ impairments, to approaches that incorporate insights from the social model of disability. The latter elucidates ways in which inappropriate environments, inadequate social supports, and systemic barriers also contribute to disability.7 An ecosystem perspective highlights these contextual factors that are likely to influence service use and patient outcomes in local settings for primary care of adults with IDD.

Finally, in the care of adults with IDD, the cumulative knowledge of expert clinicians who have extensive experience in such care and are aware of current knowledge is another valid and important basis for recommending interventions. The characterization of expert knowledge as “opinion” and its relegation to the lowest level of evidence quality in the EBM framework does not do justice to this valuable type of knowledge.

METHODS

Updating the guidelines involved a group of 45 primary care providers (family physicians, psychiatrists, nurses, and other health professionals) from urban and rural areas across Canada. They participated in a colloquium on February 24, 2016, and another on June 15 and 16, 2016. Participants were invited because they had extensive experience in the primary care of people with IDD. Many were involved in developing the previous guidelines. Before and after these colloquia, most attendees participated in smaller working groups. A health librarian experienced in the field of IDD conducted searches of electronic databases, books, and other publications on IDD between January 2010 and November 2017 (details on the search strategy are available from CFPlus*). Pertinent search results were entered in a bibliographic management system (RefWorks) accessible to members of the various working groups. The groups reviewed knowledge on specific topics assigned to them according to their respective areas of expertise. They also proposed wording for revising or adding to the previous guidelines for discussion at the June 2016 colloquium. A standard form was used to record the publications that the group members considered relevant for their revisions or additions. Leaders were designated to coordinate groups for each section of the guidelines.

After the June 2016 colloquium, a Colloquium Synthesis Group (CSG) and an editorial group were established. The latter was a subgroup of the former. The CSG consisted of 5 family physicians (W.F.S., I.C., B.H., E.G., K.M.), a psychiatrist (E.B.), 2 nurses (S.A., M. Kelly), an ethicist (J.H.), a librarian (M. Korossy), and a research associate (H.D.). Two additional external consultants with expertise in methods of guideline development provided advice. The CSG and editorial group worked in tandem to formulate the text of the guidelines based on discussions at the June 2016 colloquium. The CSG guided decisions regarding the systems employed for categorizing the types of knowledge and for distinguishing the strength of recommendations (Tables 1 and 2). Based on these decisions, the first authors of these guidelines (a family physician [W.F.S.] and a research associate [H.D.]) independently categorized the type of knowledge of publications that the working groups reviewed and proposed the grading of the strength of recommendations. The leaders designated for each section of the guidelines (4 family physicians [I.C., B.H., E.G., K.M.] and a psychiatrist [E.B.]) also separately ranked what they considered to be the most important recommendations to promote in any clinical practice and those recommendations that pertain to health issues that are most commonly overlooked in patients with IDD. Discrepancies were noted and all were then resolved by discussion. The final results were communicated to all the participants in the June 2016 colloquium for their approval.

View this table:
Table 1.

Types of knowledge: This table presents the types of knowledge and their definitions; blue and gray circles for each type of knowledge indicate different subtypes; blue indicates a stronger or especially relevant knowledge subtype for the recommendation compared with gray; open circles indicate that reviewed publications pertain to the guideline’s background (first guideline column).

View this table:
Table 2.

Strength of recommendations

RECOMMENDATIONS

What is new in the updated guidelines?

Most guidelines have been revised and new ones added. The updated guidelines begin with a new section on approaches to care. Feedback from users of the previous guidelines suggested that the quality of primary care experienced by adults with IDD is correlated not only with what their family physicians know medically but also how they relate to their patients and caregivers. These guidelines emphasize placing the person with IDD at the centre of communication, planning, and decisions regarding care. This might require more time than that allocated to the typical office visit, getting to know the patient as a person and the patient’s community, and engaging additional supports. The College of Family Physicians of Canada supports primary care that is person-centred, relational, and integrated.8,9 While these approaches to care apply to all patients, they apply especially to adults with IDD who often face challenges in having their health needs understood. They and their caregivers need to be given opportunities to share their perspectives.

Guideline 3 on capacity for informed consent was renamed capacity for decision making to place the focus less on assessment of intellectual functioning and more on enhancing communication with adults with IDD and assessing their need for accommodations and supports to contribute as much as possible to decisions affecting their health care.

The term behaviours that challenge (BTC) is adopted in these guidelines. This term situates such behaviour in the context of the interaction between people with IDD who have unique developmental needs and their environments and supports. Behaviours that challenge occur when the health, developmental, and personal needs of the individual with IDD might not be fully understood, where necessary supports are not available, when expectations might be inappropriate, and when needed environmental accommodations are not made. This entails a comprehensive and systematic approach to assessing the causes of BTC (eg, the HELP approach outlined in guideline 27).

A new guideline on life transitions (guideline 12) proposes preventive measures to mitigate the distressing effects on people with IDD of losses and changes they experience during these transitions and to prepare for a smooth transfer to new services and supports. Guidelines 27 and 28 emphasize screening for distressing life experiences that sometimes contribute to emerging BTC in adults with IDD or that might precipitate adjustment disorders in some patients if unaddressed.

The health risks and unwanted side effects associated with long-term use of certain medications or combinations of medications by adults with IDD are a concern that underlies several updated recommendations. Guidelines 27, 29, and 30 give advice on the appropriate use and standards for review of psychotropic medications.

To address gaps in the previous guidelines, new recommendations have been developed on care of families and other caregivers of patients with IDD (guideline 4), women’s gynecologic and reproductive health (guideline 19), and sleep problems (guideline 25).

In these updated guidelines, we worded recommendations as easy-to-understand actions that can be applied. Clinical tools and other practical resources are incorporated into the recommendations to aid guideline implementation. The top recommendations by clinicians in each section of the guidelines are highlighted. The central recommendations are those of performing a periodic comprehensive health assessment using adapted tools such as the Preventive Care Checklist Form,10,11 developing a health action plan, and using a comprehensive and systematic approach to assessing the causes of BTC.

The recommendations are presented in full in Table 3.8,10–333

View this table:
Table 3.

Canadian consensus guidelines on the primary care of adults with IDD: Recommendations with Embedded Imageare strongly recommended; the Embedded Image symbol indicates clinicians’ top recommendations; Embedded Image or Embedded Image indicates that reviewed publications pertain to the guideline background; blue indicates a stronger or especially relevant knowledge subtype for the recommendation compared with gray (see Tables 1 and 2).

Future dissemination and implementation

Future dissemination and implementation strategies involve education (eg, online learning modules, curricula), integration of the guidelines in electronic medical record systems, and developing guideline implementation tools in collaboration with stakeholders (eg, primary care providers, patients, caregivers).

Limitations and implications for improvement

The aim of these guidelines is to inform family physicians and other primary care providers of the most prevalent health issues of adults with IDD and optimal standards of care based on current knowledge. Any such guidelines, however, will inherently be limited in their application by the reality that adults with IDD are not a homogeneous group of patients and do not experience health disorders or respond to interventions in the same ways. The guidelines provide advice on reasonable standards of care in general. They are not intended to replace skilled clinical diagnoses or judgments regarding interventions based on discussions with patients and their caregivers.

To identify gaps in the 2011 guidelines and assess new knowledge, we drew on the expertise of family physicians and others who provide primary care to people with IDD at every stage of the updating process. There was not analogous involvement, however, of adults with IDD and their caregivers in this process. This limitation will be addressed in future updates.

Through profiling the range of types of knowledge for recommendations in the updated guidelines, we conclude that there is a need generally for more studies that elicit experiential knowledge from patients with IDD and their caregivers. There is also need for more studies contributing to knowledge of health ecosystems that affect the health and access to health care of adults with IDD. We hope that our approach of classifying and profiling types of knowledge in these guidelines will prompt greater interest and support for research in these areas.

Finally, as noted above, these updated guidelines outline optimal standards of care while indicating that the resources and supports required for following them are not readily available in some settings (eg, specialists who are knowledgeable about IDD, interprofessional teams or programs adapted to the needs of people with IDD). While advocacy to obtain such resources is encouraged, and advocacy is indeed one of the CanMEDS–Family Medicine roles, changes in practices and health systems take time and might not always be possible to achieve. Some of these updated guidelines propose alternative measures that can be considered while awaiting such resources.

Future updates

To keep these guidelines current, a comprehensive review will be conducted within 5 years of publication.

Conclusion

Adults with IDD have different and often more complex health needs and factors affecting their health than other patients do. As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. While they are familiar with common health issues that affect most patients in the community, they can also benefit from knowing what to attend to in their patients with IDD and how best to care for them. These updated guidelines are based on a review and synthesis of current knowledge by colleagues who are experienced in the care of people with IDD. They offer advice that is intended to support clinical decision making in an area of primary care in which they encounter high levels of complexity and ambiguity and in which few comprehensive guidelines by family physicians exist. Papers in a special supplement to Canadian Family Physician elaborate on some of the recommendations.334

Acknowledgement

The development of these guidelines is supported financially by the Ontario Ministry of Community and Social Services, the Ontario Ministry of Health and Long-Term Care, and Surrey Place Centre, which is affiliated with the University of Toronto. We thank the following for their assistance and contributions: Tom Archer, Violet Atkinson, Rob Balogh, Camille Bigras, Terry Broda, Brenda Chang, Cathy Deagle-Gammon, Jim Fagan, Cynthia Forster-Gibson, Angela Gonzales, Terri Hewitt, Barry Isaacs, Sumaiya Karim, Andrea Lauzon, Alvin Loh, Sue Lukersmith, Tammy Roode, Luis Salvador-Carulla, Amanda Sawyer, Anupam Thakur, Janet Vogt, Kevin Pottie, Laurie Green, Vikram Dua, Sue Ehler, Donna Lee, Denise Cahill, and Thomas Cheetham.

Notes

Editor’s key points

  • ▸ Adults with intellectual and developmental disabilities (IDD) have preventable health conditions that can vary from those of other patients.

  • ▸ Primary care of adults with IDD is often complex and requires knowledge from various sources. These updated guidelines categorize complementary types of knowledge (empirical, ecosystem, expert, and experiential) to improve holistic primary care.

  • ▸ A new section on approaches to primary care is applicable to patients with IDD and other patients with similar needs.

  • ▸ These guidelines emphasize periodic preventive health assessments, health action plans, and systematic assessment of behaviours that challenge.

Footnotes

  • ↵* The search strategy details are available in English at www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.

  • Contributors

    All authors contributed to the literature and data analysis and to preparing the manuscript for submission.

  • Competing interests

    There are no conflicts of interest involving the developers and funders of these guidelines.

  • This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www.cfp.ca and click on the Mainpro+ link.

  • This article has been peer reviewed.

  • La traduction en français de cet article se trouve à www.cfp.ca dans la table des matières du numéro d’avril 2018 à la page e137.

References

  1. 1.↵
    1. Sullivan WF,
    2. Berg JM,
    3. Bradley E,
    4. Cheetham T,
    5. Denton R,
    6. Heng J,
    7. et al
    . Primary care of adults with developmental disabilities. Canadian consensus guidelines. Can Fam Physician 2011;57:541-53. (Eng), e154–68 (Fr).
  2. 2.↵
    1. Brown I,
    2. Wehmeyer ML,
    3. Shogren KA
    . What is meant by the terms intellectual disability and developmental disabilities? In: Wehmeyer ML, Brown I, Percy M, Shogren KA, Fung WLA, editors. A comprehensive guide to intellectual and developmental disabilities. 2nd ed. Baltimore, MD: Brookes; 2017. p. 7-18.
  3. 3.↵
    1. Balogh RS,
    2. Wood JR,
    3. Lunsky Y,
    4. Ouellette-Kuntz HMJ,
    5. Wilton AS,
    6. Cobigo V,
    7. et al
    . Chronic disease management. In: Lunsky Y, Klein-Geltink JE, Yates EA, editors. Atlas on the primary care of adults in Ontario. Toronto, ON: Centre for Addiction and Mental Health, Institute for Clinical Evaluative Sciences; 2013. p. 92-116. Available from: www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e. Accessed 2015 Dec 8.
  4. 4.↵
    1. Shaw E,
    2. Oandasan I,
    3. Fowler N
    , editors. CanMEDS–Family Medicine, 2017: a competency framework for family physicians across the continuum. Mississauga, ON: College of Family Physicians of Canada; 2017. Available from: www.cfpc.ca/uploadedFiles/Resources/Resource_Items/Health_Professionals/CanMEDS-Family-Medicine-2017-ENG.pdf. Accessed 2018 Feb 9.
  5. 5.↵
    1. Salvador-Carulla L,
    2. Lukersmith S,
    3. Sullivan W
    . From the EBM pyramid to the Greek temple: a new conceptual approach to guidelines as implementation tools in mental health. Epidemiol Psychiatr Sci 2017;26(2):105-14.
  6. 6.↵
    1. Greenhalgh T,
    2. Snow R,
    3. Ryan S,
    4. Rees S,
    5. Salisbury H
    . Six ‘biases’ against patients and carers in evidence-based medicine. BMC Med 2015;13:200.
  7. 7.↵
    1. Bach M
    . Changing perspectives on intellectual and developmental disabilities. In: Wehmeyer ML, Brown I, Percy M, Shogren KA, Fung WLA, editors. A comprehensive guide to intellectual and developmental disabilities. 2nd ed. Baltimore, MD: Brookes; 2017. p. 35-46.
  8. 8.↵
    1. College of Family Physicians of Canada
    . A vision for Canada. Family practice. The patient’s medical home. Mississauga, ON: College of Family Physicians of Canada; 2011. Available from: www.cfpc.ca/uploadedFiles/Resources/Resource_Items/PMH_A_Vision_for_Canada.pdf. Accessed 2017 Oct 20.
  9. 9.↵
    1. College of Family Physicians of Canada
    . Four principles of family medicine. Mississauga, ON: College of Family Physicians of Canada; 2006.
  10. 10.↵
    1. Hennen B,
    2. O’Driscoll T,
    3. Berg JM,
    4. Block W,
    5. Forster-Gibson C,
    6. Joyce D,
    7. et al
    . Preventive care checklist for adult females with a developmental disability (DD). In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 35-41. Available from: surreyplace.ca/ddprimarycare/tools/general-health/preventive-care-checklist/. Accessed 2016 Jul 18.
  11. 11.↵
    1. Hennen B,
    2. O’Driscoll T,
    3. Berg JM,
    4. Block W,
    5. Forster-Gibson C,
    6. Joyce D,
    7. et al
    . Preventive care checklist for adult males with a developmental disability (DD). In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 35-41. Available from: surreyplace.ca/ddprimarycare/tools/general-health/preventive-care-checklist/. Accessed 2016 Jul 18.
  12. 12.
    1. Caron RM
    . Systems of health care delivery: community setting. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 185-94.
  13. 13.
    1. Perry J,
    2. Felce D,
    3. Kerr M,
    4. Bartley S,
    5. Tomlinson J,
    6. Felce J
    . Contact with primary care: the experience of people with intellectual disabilities. J Appl Res Intellect Disabil 2014;27(3):200-11. Epub 2013 Sep 13.
  14. 14.
    1. Grier L
    . Medical home. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 289-300.
  15. 15.
    1. Robinson L,
    2. Escopri N,
    3. Stenfert Kroese B,
    4. Rose J
    . The subjective experience of adults with intellectual disabilities who have mental health problems within community settings. Adv Men Health Intellect Disabil 2016;10(2):106-15.
  16. 16.
    1. De Haas C,
    2. Ryan R
    . Family centered care in a health care setting. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 49-58.
  17. 17.
    1. Sullivan WF,
    2. Heng J
    . Ethics. In: Taggart L, Cousins W, editors. Health promotion for people with intellectual and developmental disabilities. Maidenhead, UK: Open University Press; 2014. p. 204-10.
  18. 18.
    1. Baumbusch J,
    2. Phinney A,
    3. Baumbusch S
    . Practising family medicine for adults with intellectual disabilities. Patient perspectives on helpful interactions. Can Fam Physician 2014;60:e356-e61. Available from: www.cfp.ca/content/60/7/e356.full.pdf+html. Accessed 2016 Sep 21.
  19. 19.
    1. Lennox NG,
    2. Diggens JN,
    3. Ugoni AM
    . The general practice care of people with intellectual disability: barriers and solutions. J Intellect Disabil Res 1997;41(5):380-90.
  20. 20.
    1. Wilkinson J,
    2. Dreyfus D,
    3. Bowen D,
    4. Bokhour B
    . Patient and provider views on the use of medical services by women with intellectual disabilities. J Intellect Disabil Res 2013;57(11):1058-67. Epub 2012 Sep 14.
  21. 21.
    1. Espinoza KM,
    2. Heaton LJ
    . Communicating with patients with special health care needs. Dent Clin North Am 2016;60(3):693-705. Epub 2016 Mar 21.
  22. 22.
    1. Iacono T,
    2. Johnson H
    . Patients with disabilities and complex communication needs. The GP consultation. Aust Fam Physician 2004;33(8):585-9.
  23. 23.
    1. Forster S
    . Communication with patients, parents and other caregivers. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 619-28.
  24. 24.
    1. Bradley E,
    2. Hollins S
    . Books beyond words: using pictures to communicate. J Dev Disabil 2013;19(1):24-32.
  25. 25.
    Management guidelines: developmental disability. 3rd ed. Melbourne, Aust: Therapeutic Guidelines Limited; 2012. Communicating with a person with developmental disability; p. 13-22.
  26. 26.
    1. Easyhealth [website]
    . Easyhealth. Health leaflets, food and exercise, health videos, useful things for your health care. London, UK: Generate Opportunities; Available from: www.easyhealth.org.uk. Accessed 2017 Oct 25.
  27. 27.
    1. Kelly M
    . Communicating effectively with people with developmental disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 18-20. Available from: surreyplace.ca/ddprimarycare/tools/general-health/communicating-effectively/. Accessed 2017 Oct 24.
  28. 28.
    1. Wullink M,
    2. Veldhuijzen W,
    3. Lantman-de Valk HM,
    4. Metsemakers JF,
    5. Dinant GJ
    . Doctor-patient communication with people with intellectual disability—a qualitative study. BMC Fam Pract 2009;10:82.
  29. 29.
    1. Royal College of General Practitioners
    . Health checks for people with learning disabilities toolkit. London, UK: Royal College of General Practitioners; 2017. Available from: www.rcgp.org.uk/clinical-and-research/toolkits/health-check-toolkit.aspx. Accessed 2017 Sep 25.
  30. 30.
    1. O’Dell R,
    2. Leafman J,
    3. Nehrenz GM Sr.,
    4. Bustillos D
    . Health care decision making and adults with intellectual disability: a descriptive survey. AJOB Prim Res 2012;3(1):8-13.
  31. 31.
    1. Heng J,
    2. Sullivan WF
    . Ethical issues relating to consent in providing treatment and care. In: Brown I, Percy M, editors. Developmental disabilities in Ontario. 3rd ed. Toronto, ON: Ontario Association on Developmental Disabilities; 2011. p. 552-60.
  32. 32.
    1. Gillis G,
    2. Gitta M,
    3. Heng J,
    4. Korossy M,
    5. Leong R,
    6. Sullivan WF,
    7. et al
    . Informed consent in adults with developmental disabilities & informed voluntary consent checklist and sample questions. In: Sullivan WF, Developmental Disabilities Primary Care Initiative, editor. Tools for the primary care for people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse, Surrey Place Centre; 2011. p. 11-7. Available from: surreyplace.ca/ddprimarycare/tools/general-health/capacity-for-decision-making/. Accessed 2017 Jan 20.
  33. 33.
    1. United Nations
    . Convention on the rights of persons with disabilities. New York, NY: United Nations; 2006. Available from: www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx. Accessed 2017 Feb 21.
  34. 34.
    1. Williamson HJ,
    2. Perkins EA
    . Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports. Intellect Dev Disabil 2014;52(2):147-59.
  35. 35.
    1. Dawson F,
    2. Shanahan S,
    3. Fitzsimons E,
    4. O’Malley G,
    5. Mac Giollabhui N,
    6. Bramham J
    . The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress. J Intellect Disabil Res 2016;60(6):553-63. Epub 2016 Mar 29.
  36. 36.
    1. Perkins EA,
    2. Hewitt A
    . Coping with caregiver stress. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Cham, Switz: Springer; 2016. p. 2165-83.
  37. 37.
    1. Taggart L,
    2. Truesdale-Kennedy M,
    3. Ryan A,
    4. McConkey R
    . Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil 2012;16(3):217-34.
  38. 38.
    1. Gore NJ,
    2. McGill P,
    3. Toogood S,
    4. Allen D,
    5. Hughes JC,
    6. Baker PA,
    7. et al
    . Definition and scope for positive behavioural support. Int J Posit Behav Support 2013;3(2):14-23.
  39. 39.
    1. MacDonald A,
    2. McGill P
    . Outcomes of staff training in positive behaviour support: a systematic review. J Dev Phys Disabil 2013;25(1):17-33.
  40. 40.
    1. Lunsky Y,
    2. Robinson S,
    3. Reid M,
    4. Palucka A
    . Development of a mindfulness-based coping with stress group for parents of adolescents and adults with developmental disabilities. Mindfulness 2015;6(6):1335-44.
  41. 41.
    1. Hwang YS,
    2. Kearney P
    . Mindful and mutual care for individuals with developmental disabilities: a systematic literature review. J Child Fam Stud 2014;23(3):497-509.
  42. 42.
    1. James N
    . The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues: what do carers say? J Intellect Disabil 2013;17(1):6-23. Epub 2013 Jan 16.
  43. 43.
    1. Mckenzie K,
    2. Ouellette-Kuntz H,
    3. Blinkhorn A,
    4. Démoré A
    . Out of school and into distress: families of young adults with intellectual and developmental disabilities in transition. J Appl Res Intellect Disabil 2016;30(4):774-81. Epub 2016 Jun 9.
  44. 44.
    1. Ryan A,
    2. Taggart L,
    3. Truesdale-Kennedy M,
    4. Slevin E
    . Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary. Int J Older People Nurs 2014;9(3):217-26. Epub 2013 Mar 15.
  45. 45.
    1. Lunsky Y,
    2. Tint A,
    3. Robinson S,
    4. Gordeyko M,
    5. Ouellette-Kuntz H
    . System-wide information about family carers of adults with intellectual/developmental disabilities—a scoping review of the literature. J Policy Pract Intellect Disabil 2014;11(1):8-18.
  46. 46.
    1. Weiss JA,
    2. Lunsky Y
    . The Brief Family Distress Scale: a measure of crisis in caregivers of individuals with autism spectrum disorders. J Child Fam Stud 2011;20:521-8.
  47. 47.
    1. Sullivan WF,
    2. Cheetham T,
    3. Forster-Gibson C,
    4. Kelly M,
    5. Grier E,
    6. McDonell S,
    7. et al
    . Advocacy role of family physician/advanced practice nurse in caring for patients with developmental disabilities (DD). In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 26-7. Available from: surreyplace.ca/ddprimarycare/tools/general-health/advocacy-role. Accessed 2017 Oct 20.
  48. 48.
    1. Charlot LR
    . Multidisciplinary assessment. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 1677-98.
  49. 49.
    1. Goreczny AJ,
    2. Hobbs ER,
    3. Peterson LM,
    4. Bosse RM,
    5. Perrell CJ
    . Improving quality of care for individuals with intellectual and developmental disabilities via consultation: process improvement and support of interprofessional teams. Rev J Autism Dev Dis 2015;2(1):19-25.
  50. 50.
    1. Bradley E,
    2. Korossy M
    . HELP with behaviours that challenge. J Dev Disabil 2016;22(2):101-20.
  51. 51.
    1. Lindsay P,
    2. Hoghton M
    . Practicalities of care for adults with intellectual and developmental disabilities. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 313-34.
  52. 52.
    1. Byrne JH,
    2. Lennox NG,
    3. Ware RS
    . Systematic review and meta-analysis of primary healthcare interventions on health actions in people with intellectual disability. J Intellect Dev Disabil 2016;41(1):66-74.
  53. 53.
    1. Robertson J,
    2. Hatton C,
    3. Emerson E,
    4. Baines S
    . The impact of health checks for people with intellectual disabilities: an updated systematic review of evidence. Res Dev Disabil 2014;35(10):2450-62.
  54. 54.
    1. Shooshtari S,
    2. Temple B,
    3. Waldman C,
    4. Abraham S,
    5. Ouellette-Kuntz H,
    6. Lennox N
    . Stakeholders’ perspectives towards the use of the comprehensive health assessment program (CHAP) for adults with intellectual disabilities in Manitoba. J Appl Res Intellect Disabil 2017;30(4):672-83. Epub 2016 Jun 9.
  55. 55.
    1. Durbin J,
    2. Selick A,
    3. Casson I,
    4. Green L,
    5. Spassiani N,
    6. Perry A,
    7. et al
    . Evaluating the implementation of health checks for adults with intellectual and developmental disabilities in primary care: the importance of organizational context. Intellect Dev Disabil 2016;54(2):136-50.
  56. 56.
    1. Sullivan WF,
    2. Cheetham T,
    3. Forster-Gibson C,
    4. Kelly M,
    5. Grier E,
    6. McDonell S,
    7. et al
    . Office organizational tips: patients with developmental disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 21-3. Available from: surreyplace.ca/ddprimarycare/tools/general-health/office-organizational-tips/. Accessed 2017 Feb 26.
  57. 57.
    1. Cassidy SB,
    2. Allanson JE
    . Management of genetic syndromes. 3rd ed. Hoboken, NJ: Wiley-Blackwell; 2010.
  58. 58.
    1. Van Karnebeek CD,
    2. Houben RF,
    3. Lafek M,
    4. Giannasi W,
    5. Stockler S
    . The treatable intellectual disability APP www.treatable-id.org: a digital tool to enhance diagnosis & care for rare diseases. Orphanet J Rare Dis 2012;7:47.
  59. 59.
    1. Srour M,
    2. Shevell M
    . Genetics and the investigation of developmental delay/intellectual disability. Arch Dis Child 2014;99(4):386-9. Epub 2013 Dec 16.
  60. 60.
    1. Developmental Disabilities Primary Care Initiative
    . Health watch tables for specific syndromes. Toronto, ON: Surrey Place Centre; Available from: surreyplace.ca/ddprimarycare/health-watch-tables/. Accessed 2017 Nov 14.
  61. 61.
    1. Searle B
    , editor. Unique: rare chromosome disorder & single gene guides [website]. Surrey, UK: Unique; 2015. Available from: www.rarechromo.org/html/DisorderGuides.asp. Accessed 2017 Sep 13.
  62. 62.
    1. Moeschler JB,
    2. Shevell M,
    3. Committee on Genetics
    . Comprehensive evaluation of the child with intellectual disability or global developmental delays. Pediatrics 2014;134(3):e903-18.
  63. 63.
    1. Boycott K,
    2. Hartley T,
    3. Adam S,
    4. Bernier F,
    5. Chong K,
    6. Fernandez BA,
    7. et al
    . The clinical application of genome-wide sequencing for monogenic diseases in Canada: position statement of the Canadian College of Medical Geneticists. J Med Genet 2015;52(7):431-7. Epub 2015 May 7.
  64. 64.
    1. Forster-Gibson C
    . Genetic assessment: frequently asked questions. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 2-5. Available from: surreyplace.ca/ddprimarycare/tools/general-health/genetic-assessment/. Accessed 2017 May 10.
  65. 65.
    1. Provincial IODE Genetics Resource Centre, London Health Sciences Centre
    . Genetic resources Ontario. London, ON: London Health Sciences Centre; 2017. Available from: www.geneticresourcesontario.ca. Accessed 2017 Sep 13.
  66. 66.
    1. Adam MP,
    2. Ardinger HH,
    3. Pagon RA,
    4. Wallace SE
    , editors. GeneReviews: medical genetics information resource. Seattle, WA: University of Washington; 2017. Available from: www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene. Accessed 2017 Oct 9.
  67. 67.
    1. The AAIDD Ad Hoc Committee on Terminology and Classification
    . Intellectual disability: definition, classification, and systems of supports. 11th ed. Washington, DC: American Association on Intellectual and Developmental Disabilities; 2010.
  68. 68.
    1. American Psychiatric Association,
    2. American Psychiatric Association DSM-5 Task Force
    . Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
  69. 69.
    1. Schalock RL,
    2. Luckasson R
    . A systematic approach to subgroup classification in intellectual disability. Intellect Dev Disabil 2015;53(5):358-66.
  70. 70.
    1. Tassé MJ,
    2. Luckasson R,
    3. Schalock RL
    . The relation between intellectual functioning and adaptive behavior in the diagnosis of intellectual disability. Intellect Dev Disabil 2016;54(6):381-90.
  71. 71.
    1. Edwards B,
    2. Temple V,
    3. Dunn L
    . Adaptive functioning and communication associated with different levels of developmental disabilities (DD). In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 6-7. Available from: surreyplace.ca/ddprimarycare/tools/general-health/adaptive-functioning/. Accessed 2016 Dec 14.
  72. 72.
    1. National Institute for Health and Care Excellence
    . Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NICE guidelines. London, UK: National Institute for Health and Care Excellence; 2015. Available from: www.nice.org.uk/guidance/ng11/evidence/full-guideline-2311243668. Accessed 2016 Mar 25.
  73. 73.
    1. Banks R,
    2. Bush A
    . Challenging behaviour: a unified approach—update. Clinical and service guidelines for supporting children, young people and adults with intellectual disabilities who are at risk of receiving abusive or restrictive practices. London, UK: Royal College of Psychiatrists; 2016. Available from: www.rcpsych.ac.uk/pdf/FR_ID_08.pdf. Accessed 2016 Apr 25.
  74. 74.
    1. Breau LM,
    2. Burkitt C,
    3. Salsman S,
    4. Sarsfield-Turner T,
    5. Mullan R
    . Chronic pain scale for nonverbal adults with intellectual disabilities (CPS-NAID). Halifax, NS: Centre for Pediatric Pain Research; 2009. Available from: http://pediatric-pain.ca/wp-content/uploads/2013/04/CPSNAID.pdf. Accessed 2017 Oct 11.
  75. 75.
    1. Burkitt C,
    2. Breau LM,
    3. Salsman S,
    4. Sarsfield-Turner T,
    5. Mullan R
    . Pilot study of the feasibility of the non-communicating children’s pain checklist revised for pain assessment for adults with intellectual disabilities. J Pain Manag 2009;2(1):37-49.
  76. 76.
    1. Lotan M,
    2. Moe-Nilssen R,
    3. Ljunggren AE,
    4. Strand LI
    . Reliability of the noncommunicating adult pain checklist (NCAPC), assessed by different groups of health workers. Res Dev Disabil 2009;30:735-45. Available from: www.painbc.ca/sites/default/files/Non-Communicating%20Adult%20Pain%20Checklist.pdf. Accessed 2017 Nov 6.
  77. 77.
    1. Lotan M,
    2. Moe-Nilssen R,
    3. Ljunggren AE,
    4. Strand LI
    . Measurement properties of the non-communicating adult pain checklist (NCAPC): a pain scale for adults with intellectual and developmental disabilities, scored in a clinical setting. Res Dev Disabil 2010;31(2):367-75.
  78. 78.
    1. Jansen DE,
    2. Krol B,
    3. Groothoff JW,
    4. Post D
    . People with intellectual disability and their health problems: a review of comparative studies. J Intellect Disabil Res 2004;48(Pt 2):93-102.
  79. 79.
    1. De Knegt NC,
    2. Pieper MJ,
    3. Lobbezoo F,
    4. Schuengel C,
    5. Evenhuis HM,
    6. Passchier J,
    7. et al
    . Behavioral pain indicators in people with intellectual disabilities: a systematic review. J Pain 2013;14(9):885-96. Epub 2013 Jul 3.
  80. 80.
    1. Kwok H,
    2. Cheung PW
    . Co-morbidity of psychiatric disorder and medical illness in people with intellectual disabilities. Curr Opin Psychiatry 2007;20(5):443-9.
  81. 81.
    1. Regnard C,
    2. Matthews D,
    3. Gibson L,
    4. Learning Disability and Palliative Care Team at Northgate Hospital
    . DisDAT, version 20: disability distress assessment tool. Northumberland, UK: Northumberland Tyne & Wear Trust, St Oswald’s Hospice; 2008. Available from: www.disdat.co.uk. Accessed 2016 Dec 13.
  82. 82.
    1. Doody O,
    2. Bailey ME
    . Pain and pain assessment in people with intellectual disability: issues and challenges in practice. Br J Learn Disabil 2017;45(3):157-65.
  83. 83.
    1. Cobigo V,
    2. Ouellette-Kuntz HMJ,
    3. Lake JK,
    4. Wilton AS,
    5. Lunsky Y
    . Medication use. In: Lunsky Y, Klein-Geltink JE, Yates EA, editors. Atlas on the primary care of adults in Ontario. Toronto, ON: Centre for Addiction and Mental Health and Institute for Clinical Evaluative Sciences; 2013. p. 117-36. Available from: www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e. Accessed 2015 Dec 8.
  84. 84.
    1. Haider SI,
    2. Ansari Z,
    3. Vaughan L,
    4. Matters H,
    5. Emerson E
    . Prevalence and factors associated with polypharmacy in Victorian adults with intellectual disability. Res Dev Disabil 2014;35(11):3071-80. Epub 2014 Aug 15.
  85. 85.
    1. O’Dwyer M,
    2. Peklar J,
    3. McCallion P,
    4. McCarron M,
    5. Henman MC
    . Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population: a cross-sectional observational nationwide study. BMJ Open 2016;6(4):e010505. 2015-010505.
  86. 86.
    1. Scheifes A,
    2. Egberts TC,
    3. Stolker JJ,
    4. Nijman HL,
    5. Heerdink ER
    . Structured medication review to improve pharmacotherapy in people with intellectual disability and behavioural problems. J Appl Res Intellect Disabil 2016;29(4):346-55.
  87. 87.
    1. England NHS
    . Stopping over medication of people with a learning disability, autism or both (STOMP). Wakefield, UK: NHS England; 2016. Available from: www.england.nhs.uk/learning-disabilities/stomp. Accessed 2017 Sep 13.
  88. 88.
    1. Branford D,
    2. Bhaumik S
    . Prescribing practice. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015. p. 11-9.
  89. 89.
    1. Fish R,
    2. Hatton C,
    3. Chauhan U
    . “Tell me what they do to my body”: a survey to find out what information people with learning disabilities want with their medications. Br J Learn Disabil 2017;45(3):217-25.
  90. 90.
    1. Erickson SR,
    2. LeRoy B
    . Health literacy and medication administration performance by caregivers of adults with developmental disabilities. J Am Pharm Assoc 2015;55(2):169-77.
  91. 91.
    1. Ferguson L,
    2. Murphy GH
    . The effects of training on the ability of adults with an intellectual disability to give informed consent to medication. J Intellect Disabil Res 2014;58(9):864-73. Epub 2013 Dec 16.
  92. 92.
    1. Sobsey D
    . Family violence and people with intellectual disabilities. Ottawa, ON: National Clearinghouse on Family Violence, Public Health Agency of Canada; 2002. Available from: http://publications.gc.ca/collections/Collection/H72-22-22-2002E.pdf. Accessed 2009 Jul 21.
  93. 93.
    1. Beadle-Brown J,
    2. Mansell J,
    3. Cambridge P,
    4. Milne A,
    5. Whelton B
    . Adult protection of people with intellectual disabilities: incidence, nature and responses. J Appl Res Intellect Disabil 2010;23(6):573-84.
  94. 94.
    1. Hughes RB,
    2. Lund EM,
    3. Gabrielli J,
    4. Powers LE,
    5. Curry MA
    . Prevalence of interpersonal violence against community-living adults with disabilities: a literature review. Rehabil Psychol 2011;56(4):302-19.
  95. 95.
    1. Hughes K,
    2. Bellis MA,
    3. Jones L,
    4. Wood S,
    5. Bates G,
    6. Eckley L,
    7. et al
    . Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. Lancet 2012;379(9826):1621-9. Epub 2012 Feb 28.
  96. 96.
    1. Ombudsman Ontario
    . Nowhere to turn: investigation into the Ministry of Community and Social Services’ response to situations of crisis involving adults with developmental disabilities. Toronto, ON: Ombudsman Ontario; 2016. Available from: www.ombudsman.on.ca/Files/sitemedia/Documents/NTT-Final-EN-w-cover.pdf. Accessed 2017 Oct 25.
  97. 97.
    1. Franssen JJL,
    2. Maaskant MA,
    3. van Schrojenstein Lantmande Valk HMJ
    . Qualitative study of malnutrition in people with intellectual disabilities. J Policy Pract Intellect Disabil 2011;8(4):239-46.
  98. 98.
    1. Northway R,
    2. Melsome M,
    3. Flood S,
    4. Bennett D,
    5. Howarth J,
    6. Thomas B
    . How do people with intellectual disabilities view abuse and abusers? J Intellect Disabil 2013;17(4):361-75. Epub 2013 Oct 23.
  99. 99.
    1. Robinson S,
    2. Chenoweth L
    . Preventing abuse in accommodation services: from procedural response to protective cultures. J Intellect Disabil 2011;15(1):63-74.
  100. 100.
    1. Ontario Ministry of Community and Social Services [website]
    . ReportON. Toronto, ON: Ontario Ministry of Community and Social Services; 2017. Available from: www.mcss.gov.on.ca/en/mcss/programs/developmental/reportON/. Accessed 2017 Oct 25.
  101. 101.
    1. Fudge Schormans A,
    2. Sobsey D
    . Maltreatment of children with developmental disabilities. In: Brown I, Percy M, editors. A comprehensive guide to intellectual and developmental disabilities. Baltimore, MD: Paul H. Brookes Publishing; 2007. p. 467-87.
  102. 102.
    1. Bhaumik S,
    2. Watson J,
    3. Barrett M,
    4. Raju B,
    5. Burton T,
    6. Forte J
    . Transition for teenagers with intellectual disability: carers’ perspectives. J Policy Pract Intellect Disabil 2011;8(1):53-61.
  103. 103.
    1. Tuffrey-Wijne I,
    2. Bernal J,
    3. Hubert J,
    4. Butler G,
    5. Hollins S
    . Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nurs Times 2010;106(19):15-8.
  104. 104.
    1. Baumbusch J,
    2. Mayer S,
    3. Phinney A,
    4. Baumbusch S
    . Aging together: caring relations in families of adults with intellectual disabilities. Gerontologist 2017;57(2):341-7.
  105. 105.
    1. Ramirez S,
    2. Collins S,
    3. Muñoz BL
    . Transitioning youth to adult health care: a person-centered and culturally competent approach. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 111-9.
  106. 106.
    1. Wood D,
    2. Edwards LR,
    3. Hennen B
    . Health care transition. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 219-28.
  107. 107.
    1. Hartley SL,
    2. MacLean WE Jr.
    . Stressful social interactions experienced by adults with mild intellectual disability. Am J Intellect Dev Disabil 2009;114(2):71-84.
  108. 108.
    1. Beail N
    , editor. Psychological therapies and people who have intellectual disabilities. London, UK: British Psychological Society, Division of Clinical Psychology; 2016. Available from: www.bps.org.uk/system/files/Public%20files/Policy/psychological_therapies_and_people_who_have_id_pdf_for_review.pdf. Accessed 2017 Nov 6.
  109. 109.
    1. Tinney G,
    2. Forde J,
    3. Hone L,
    4. Flanagan L,
    5. Smith M
    . Safe and social: what does it mean anyway?? Br J Learn Disabil 2015;43(1):55-61.
  110. 110.
    1. Hall SA
    . Community involvement of young adults with intellectual disabilities: their experiences and perspectives on inclusion. J Appl Res Intellect Disabil 2017;30(5):859-71.
  111. 111.
    1. Developmental Disabilities Primary Care Initiative
    . DDPCI healthcare transition tools and resources for families and caregivers of youth with developmental disabilities. Toronto, ON: Surrey Place Centre; 2014. Available from: surreyplace.ca/ddprimarycare/tools/general-health/transitions/. Accessed 2017 Mar 4.
  112. 112.
    1. Lennox N,
    2. Ware R,
    3. Carrington S,
    4. O’Callaghan M,
    5. Williams G,
    6. McPherson L,
    7. et al
    . Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial. BMC Public Health 2012;12:750.
  113. 113.
    1. Canadian Association of Paediatric Health Centres, National Transitions Community of Practice
    . A guideline for transition from paediatric to adult health care for youth with special health care needs: a national approach. Toronto, ON: Canadian Association of Paediatric Health Centres, Knowledge Exchange Network; 2016. Available from: https://ken.caphc.org/xwiki/bin/download/Transitioning+from+Paediatric+to+Adult+Care/A+Guideline+for+Transition+from+Paediatric+to+Adult+Care/2017%2005%2010%20CAPHC%20Transition%20to%20Adult%20HC%20Guideline.pdf. Accessed 2017 Nov 6.
  114. 114.
    1. Kripke CC
    . Primary care for adolescents with developmental disabilities. Prim Care 2014;41(3):507-18.
  115. 115.
    1. Hsieh K,
    2. Rimmer JH,
    3. Heller T
    . Obesity and associated factors in adults with intellectual disability. J Intellect Disabil Res 2014;58(9):851-63. Epub 2013 Nov 20.
  116. 116.
    1. Grondhuis SN,
    2. Aman MG
    . Overweight and obesity in youth with developmental disabilities: a call to action. J Intellect Disabil Res 2014;58(9):787-99.
  117. 117.
    1. Casey AF
    . Measuring body composition in individuals with intellectual disability: a scoping review. J Obes 2013;2013:628428. Available from: www.ncbi.nlm.nih.gov/pmc/articles/PMC3671262. Accessed 2016 Jun 28.
  118. 118.
    1. Health Canada
    . Canadian guidelines for body weight classification in adults. Ottawa, ON: Health Canada; 2003. Available from: www.canada.ca/en/health-canada/services/food-nutrition/healthy-eating/healthy-weights/canadian-guidelines-body-weight-classification-adults.html. Accessed 2017 Aug 29.
  119. 119.
    1. Temple VA,
    2. Foley JT,
    3. Lloyd M
    . Body mass index of adults with intellectual disability participating in Special Olympics by world region. J Intellect Disabil Res 2014;58(3):277-84. Epub 2013 Jan 17.
  120. 120.
    1. Spanos D,
    2. Hankey CR,
    3. Boyle S,
    4. Koshy P,
    5. MacMillan S,
    6. Matthews L,
    7. et al
    . Carers’ perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: a qualitative study. J Intellect Disabil Res 2013;57(1):90-102. Epub 2012 Feb 28.
  121. 121.
    1. Kuijken NMJ,
    2. Naaldenberg J,
    3. Nijhuis-van der Sanden MW,
    4. van Schrojenstein-Lantman de Valk HMJ
    . Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives. J Intellect Disabil Res 2016;60(3):228-41.
  122. 122.
    1. Blick RN,
    2. Saad AE,
    3. Goreczny AJ,
    4. Roman K,
    5. Sorensen CH
    . Effects of declared levels of physical activity on quality of life of individuals with intellectual disabilities. Res Dev Disabil 2015;37:223-9. Epub 2014 Dec 17.
  123. 123.
    1. Robertson J,
    2. Emerson E,
    3. Baines S,
    4. Hatton C
    . Obesity and health behaviours of British adults with self-reported intellectual impairments: cross sectional survey. BMC Public Health 2014;14(1):219.
  124. 124.
    1. Ogg-Groenendaal M,
    2. Hermans H,
    3. Claessens B
    . A systematic review on the effect of exercise interventions on challenging behavior for people with intellectual disabilities. Res Dev Disabil 2014;35(7):1507-17. Epub 2014 Apr 21.
  125. 125.
    1. Brooker K,
    2. van Dooren K,
    3. McPherson L,
    4. Lennox N,
    5. Ware R
    . A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability. J Phys Act Health 2015;12(3):434-44. Epub 2014 May 6.
  126. 126.
    1. Carraro A,
    2. Gobbi E
    . Exercise intervention to reduce depressive symptoms in adults with intellectual disabilities. Percept Mot Skills 2014;119(1):1-5.
  127. 127.
    1. Spanos D,
    2. Melville CA,
    3. Hankey CR
    . Weight management interventions in adults with intellectual disabilities and obesity: a systematic review of the evidence. Nutr J 2013;12:132.
  128. 128.
    1. Hey C,
    2. Fessler S,
    3. Hafner N,
    4. Lange BP,
    5. Euler HA,
    6. Neumann K
    . High prevalence of hearing loss at the Special Olympics: is this representative of people with intellectual disability? J Appl Res Intellect Disabil 2014;27(2):125-33. Epub 2013 Apr 23.
  129. 129.
    1. Herer GR
    . Intellectual disabilities and hearing loss. Comm Disord Q 2012;33(4):252-60.
  130. 130.
    1. McClimens A,
    2. Brennan S,
    3. Hargreaves P
    . Hearing problems in the learning disability population: is anybody listening? Br J Learn Disabil 2015;43(3):153-60.
  131. 131.
    1. Evenhuis HM,
    2. Natzgam LMD
    . IASSID international consensus statement: early identification of hearing and visual impairment in children and adults with an intellectual disability. Leiden, Netherlands: International Association of Scientific Studies on Intellectual Disability (IASSID), Special Interest Group on Health Issues; 1997. Available from: www.iassidd.org/uploads/legacy/pdf/consensir.alg.doc. Accessed 2016 Jul 15.
  132. 132.
    1. Li JC,
    2. Wong K,
    3. Park AS,
    4. Fricke TR,
    5. Jackson AJ
    . The challenges of providing eye care for adults with intellectual disabilities. Clin Exp Optom 2015;98(5):420-9.
  133. 133.
    1. Robinson BE,
    2. Mairs K,
    3. Glenny C,
    4. Stolee P
    . An evidence-based guideline for the frequency of optometric eye examinations. Prim Health Care 2012;2(4):121.
  134. 134.
    1. Bent S,
    2. McShea L,
    3. Brennan S
    . The importance of hearing: a review of the literature on hearing loss for older people with learning disabilities. Br J Learn Disabil 2015;43(4):277-84.
  135. 135.
    1. Crandell CC,
    2. Roeser RJ
    . Incidence of excessive/impacted cerumen in individuals with mental retardation: a longitudinal investigation. Am J Ment Retard 1993;97(5):568-74.
  136. 136.
    1. Oron Y,
    2. Shushan S,
    3. Ben-David N,
    4. Flaksman H,
    5. Korenbrot F,
    6. Merrick J,
    7. et al
    . Guidelines for ear, nose, and throat examination of adults with intellectual disabilities: report of a clinical practice application. J Policy Pract Intellect Disabil 2015;12(4):272-8.
  137. 137.
    1. Anders PL,
    2. Davis EL
    . Oral health of patients with intellectual disabilities: a systematic review. Spec Care Dentist 2010;30(3):110-7.
  138. 138.
    1. Fernandez JB,
    2. Lim LJ,
    3. Dougherty N,
    4. LaSasso J,
    5. Atar M,
    6. Daronch M
    . Oral health findings in athletes with intellectual disabilities at the NYC Special Olympics. Spec Care Dent 2012;32(5):205-9.
  139. 139.
    1. Picos A,
    2. Chisnoiu A,
    3. Dumitrasc DL
    . Dental erosion in patients with gastroesophageal reflux disease. Adv Clin Exp Med 2013;22(3):303-7.
  140. 140.
    Management guidelines: developmental disability. 3rd ed. Melbourne, Aust: Therapeutic Guidelines Limited; 2012. Oral health; p. 240-3.
  141. 141.
    1. Binkley CJ,
    2. Haugh GS,
    3. Kitchens DH,
    4. Wallace DL,
    5. Sessler DI
    . Oral microbial and respiratory status of persons with mental retardation/intellectual and developmental disability: an observational cohort study. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2009;108(5):722-31. Epub 2009 Sep 12.
  142. 142.
    1. Morgan JP,
    2. Minihan PM,
    3. Stark PC,
    4. Finkelman MD,
    5. Yantsides KE,
    6. Park A,
    7. et al
    . The oral health status of 4,732 adults with intellectual and developmental disabilities. J Am Dent Assoc 2012;143(8):838-46.
  143. 143.
    1. Finkelman MD,
    2. Stark PC,
    3. Tao W,
    4. Morgan JP
    . Relationship between duration of treatment and oral health in adults with intellectual and developmental disabilities. Spec Care Dentist 2014;34(4):171-5. Epub 2013 Oct 3.
  144. 144.
    1. Forster-Gibson C,
    2. Berg J
    . Health watch table: Down syndrome. In: Sullivan WF, Health Watch Tables Working Group, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 43-5. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/down-synrome. Accessed 2017 Feb 25.
  145. 145.
    1. Forster-Gibson C,
    2. Berg J
    . Health watch table: Prader-Willi syndrome (PWS). In: Sullivan WF, Health Watch Tables Working Group, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 50-4. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/prader-willi-syndrome. Accessed 2017 Oct 20.
  146. 146.
    1. Forster-Gibson C,
    2. Berg J
    . Health watch table: 22q11.2 deletion syndrome. In: Sullivan WF, Health Watch Tables Working Group, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 58-61. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/22q11.2del-syndrome. Accessed 2017 Feb 18.
  147. 147.
    1. De Winter CF,
    2. van den Berge AP,
    3. Schoufour JD,
    4. Oppewal A,
    5. Evenhuis HM
    . A 3-year follow-up study on cardiovascular disease and mortality in older people with intellectual disabilities. Res Dev Disabil 2016;53–54:115-26. Epub 2016 Feb 11.
  148. 148.
    1. Morin D,
    2. Merineau-Cote J,
    3. Ouellette-Kuntz H,
    4. Tasse MJ,
    5. Kerr M
    . A comparison of the prevalence of chronic disease among people with and without intellectual disability. Am J Intellect Dev Disabil 2012;117(6):455-63.
  149. 149.
    1. Merrick J,
    2. Morad M
    . Cardiovascular disease. In: O’Hara J, McCarthy JM, Bouras N, editors. Intellectual disability and ill health: a review of the evidence. Cambridge, UK: Cambridge University Press; 2010. p. 73-7.
  150. 150.
    Management guidelines: developmental disability. 3rd ed. Melbourne, Aust: Therapeutic Guidelines Limited; 2012. Preventive health care and health promotion; p. 117-9.
  151. 151.
    1. Lunsky Y,
    2. Klein-Geltink JE,
    3. Yates EA
    . Atlas on the primary care of adults in Ontario. Toronto, ON: Centre for Addiction and Mental Health, Institute for Clinical Evaluative Sciences; 2013. Available from: www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e. Accessed 2015 Dec 8.
  152. 152.
    1. Freeman SB,
    2. Bean LH,
    3. Allen EG,
    4. Tinker SW,
    5. Locke AE,
    6. Druschel C,
    7. et al
    . Ethnicity, sex, and the incidence of congenital heart defects: a report from the National Down Syndrome Project. Gen Med 2008;10(3):173-80. Accessed 13 May 2008.
  153. 153.
    1. Colvin KL,
    2. Yeager ME
    . What people with Down syndrome can teach us about cardiopulmonary disease. Eur Respir Rev 2017;26(143):160098.
  154. 154.
    1. Webb GD,
    2. Williams RG
    . Care of the adult with congenital heart disease: introduction. J Am Coll Cardiol 2001;37(5):1166.
  155. 155.
    1. Silversides CK,
    2. Marelli A,
    3. Beauchesne L,
    4. Dore A,
    5. Kiess M,
    6. Salehian O,
    7. et al
    . Canadian Cardiovascular Society 2009 Consensus Conference on the Management of Adults with Congenital Heart Disease: executive summary. Can J Cardiol 2010;26(3):143-50.
  156. 156.
    1. Warnes CA,
    2. Williams RG,
    3. Bashore TM,
    4. Child JS,
    5. Connolly HM,
    6. Dearani JA,
    7. et al
    . ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: executive summary: a report of the American College of Cardiology/American Heart Association Task Force on practice guidelines (writing committee to develop guidelines for the management of adults with congenital heart disease). Circulation 2008;118(23):2395-451. Epub 2008 Nov 7.
  157. 157.
    1. Canadian Congenital Heart Alliance [website]
    . Find an adult CHD centre near you. Oakville, ON: Canadian Congenital Heart Alliance; 2017. Available from: www.cchaforlife.org/find-adult-chd-centre-near-you. Accessed 2018 Feb 15.
  158. 158.
    1. Patja K,
    2. Molsa P,
    3. Iivanainen M
    . Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study. J Intellect Disabil Res 2001;45(Pt 1):30-40.
  159. 159.
    1. Chadwick DD,
    2. Jolliffe J
    . A descriptive investigation of dysphagia in adults with intellectual disabilities. J Intellect Disabil Res 2009;53(1):29-43. Epub 2008 Aug 28.
  160. 160.
    1. Marks JH
    . Pulmonary care of children and adolescents with developmental disabilities. Pediatr Clin North Am 2008;55(6):1299-314.
  161. 161.
    1. Rogers B,
    2. Stratton P,
    3. Msall M,
    4. Andres M,
    5. Champlain MK,
    6. Koerner P,
    7. et al
    . Long-term morbidity and management strategies of tracheal aspiration in adults with severe developmental disabilities. Am J Ment Retard 1994;98(4):490-8.
  162. 162.
    1. Thillai M
    . Respiratory diseases. In: O’Hara J, McCarthy JM, Bouras N, editors. Intellectual disability and ill health: a review of the evidence. Cambridge, UK: Cambridge University Press; 2010. p. 78-87.
  163. 163.
    1. McCaslin CA,
    2. Schuen JN
    . Pulmonology and sleep disordered breathing. In: Rubin IL, Merrick J, Greydanus DE, Patel D, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Cham, Switz: Springer; 2016. p. 1325-46.
  164. 164.
    1. Perez CM,
    2. Ball SL,
    3. Wagner AP,
    4. Clare ICH,
    5. Holland AJ,
    6. Redley M
    . The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs. J Intellect Disabil Res 2015;59(7):638-52. Epub 2014 Nov 3.
  165. 165.
    1. Lin E,
    2. Selick A,
    3. Balogh RS,
    4. Isaacs BJ,
    5. Ouellette-Kuntz HMJ,
    6. Klein-Geltink JE,
    7. et al
    . Prevalence, demographic and disease profiles. In: Lunsky Y, Klein-Geltink JE, Yates EA, editors. Atlas on the primary care of adults in Ontario. Toronto, ON: Centre for Addiction and Mental Health, Institute for Clinical Evaluative Sciences; 2013. p. 20-40. Available from: www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e. Accessed 8 Dec 2015.
  166. 166.
    1. Gale L,
    2. Naqvi H,
    3. Russ L
    . Asthma, smoking and BMI in adults with intellectual disabilities: a community-based survey. J Intellect Disabil Res 2009;53(9):787-96. Epub 2009 Jul 16.
  167. 167.
    1. Atay O
    . Gastrointestinal issues. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 1209-24.
  168. 168.
    1. Bohmer CJ,
    2. Klinkenberg-Knol EC,
    3. Niezen-de Boer,
    4. Meuwissen SG
    . Gastroesophageal reflux disease in intellectually disabled individuals: how often, how serious, how manageable? Am J Gastroenterol 2000;95(8):1868-72.
  169. 169.
    1. Bohmer CJ,
    2. Taminiau JA,
    3. Klinkenberg-Knol EC,
    4. Meuwissen SG
    . The prevalence of constipation in institutionalized people with intellectual disability. J Intellect Disabil Res 2001;45(Pt 3):212-8.
  170. 170.
    1. Kozlowski AM,
    2. Taylor T,
    3. Gonzalez ML,
    4. Girolami PA
    . Feeding disorders. In: Matson JL, Matson ML, editors. Comorbid conditions in individuals with intellectual disabilities. Dordrecht, Switz: Springer; 2015. p. 109-43.
  171. 171.
    1. Tracy JM,
    2. Wallace R
    . Presentations of physical illness in people with developmental disability: the example of gastro-oesophageal reflux. Med J Aust 2001;175(2):109-11.
  172. 172.
    1. Morad M,
    2. Nelson NP,
    3. Merrick J,
    4. Davidson PW,
    5. Carmeli E
    . Prevalence and risk factors of constipation in adults with intellectual disability in residential care centers in Israel. Res Dev Disabil 2007;28(6):580-6. Epub 2007 Mar 2.
  173. 173.
    1. Coleman J,
    2. Spurling G
    . Constipation in people with learning disability. BMJ 2010;340:c222.
  174. 174.
    1. Mishori R,
    2. McHale C
    . Pica: an age-old eating disorder that’s often missed. J Fam Pract 2014;63(7):E1-4.
  175. 175.
    1. Williams DE,
    2. McAdam D
    . Assessment, behavioral treatment, and prevention of pica: clinical guidelines and recommendations for practitioners. Res Dev Disabil 2012;33(6):2050-7. Epub 2012 Jun 28.
  176. 176.
    1. Kitchens DH,
    2. Binkley CJ,
    3. Wallace DL,
    4. Darling D
    . Helicobacter pylori infection in people who are intellectually and developmentally disabled: a review. Spec Care Dent 2007;27(4):127-33.
  177. 177.
    1. Duff M,
    2. Scheepers M,
    3. Cooper M,
    4. Hoghton M,
    5. Baddeley P
    . Helicobacter pylori: has the killer escaped from the institution? A possible cause of increased stomach cancer in a population with intellectual disability. J Intellect Disabil Res 2001;45(Pt 3):219-25.
  178. 178.
    1. Wallace R,
    2. Schluter PJ,
    3. Duff M,
    4. Ouellette-Kuntz H,
    5. Webb PMSM
    . A review of the risk factors for, consequences, diagnosis, and management of Helicobacter pylori in adults with intellectual disabilities. J Policy Pract Intellect Disabil 2004;1(3–4):147-63.
  179. 179.
    1. Wallace RA,
    2. Schluter PJ,
    3. Webb PM
    . Recurrence of Helicobacter pylori infection in adults with intellectual disability. Intern Med J 2004;34(3):132-3.
  180. 180.
    1. Cockburn-Wells H
    . Managing constipation in adults with severe learning disabilities. Learn Disabil Pract 2014;17(9):16-22.
  181. 181.
    1. Vande Velde S,
    2. Van Biervliet S,
    3. Van Goethem G,
    4. De Looze D,
    5. Van Winckel M
    . Colonic transit time in mentally retarded persons. Int J Colorectal Dis 2010;25(7):867-71. Epub 2010 Mar 20.
  182. 182.
    1. Developmental Disabilities Primary Care Initiative.
    Tools for caregivers: monitoring charts. Toronto, ON: Surrey Place Centre; 2013. Bowel movement (B.M.)—monthly monitoring record (for people who have bowel problems). Available from: surreyplace.ca/ddprimarycare/tools/physical-health/monitoring-charts/. Accessed 2018 Feb 15.
  183. 183.
    1. Grover SR
    . Gynaecological issues in adolescents with disability. J Paediatr Child Health 2011;47(9):610-3.
  184. 184.
    1. Savasi I,
    2. Spitzer RF,
    3. Allen LM,
    4. Ornstein MP
    . Menstrual suppression for adolescents with developmental disabilities. J Pediatr Adolesc Gynecol 2009;22(3):143-9.
  185. 185.
    1. Van Schrojenstein Lantman-de,
    2. Valk HMJ,
    3. Rook F,
    4. Maaskant MA
    . The use of contraception by women with intellectual disabilities. J Intellect Disabil Res 2011;55(4):434-40. Epub 2011 Mar 3.
  186. 186.
    1. Atkinson E,
    2. Bennett MJ,
    3. Dudley J,
    4. Grover S,
    5. Matthews K,
    6. Moore P,
    7. et al
    . Consensus statement: menstrual and contraceptive management in women with an intellectual disability. Aust N Z J Obstet Gynaecol 2003;43(2):109-10.
  187. 187.
    1. McCarthy M
    . Prescribing contraception to women with intellectual disabilities: general practitioners’ attitudes and practices. Sex Disab 2011;29(4):339-49.
  188. 188.
    1. Kluge EH
    . After “Eve”: whither proxy decision-making? CMAJ 1987;137(8):715-20.
  189. 189.
    1. Brown HK,
    2. Cobigo V,
    3. Lunsky Y,
    4. Vigod SN
    . Maternal and offspring outcomes in women with intellectual and developmental disabilities: a population-based cohort study. BJOG 2017;124(5):757-65. Epub 2016 May 24.
  190. 190.
    1. Brown HK,
    2. Kirkham YA,
    3. Cobigo V,
    4. Lunsky Y,
    5. Vigod SN
    . Labour and delivery interventions in women with intellectual and developmental disabilities: a population-based cohort study. J Epidemiol Community Health 2016;70(3):238-44. Epub 2015 Oct 8.
  191. 191.
    1. Brown HK,
    2. Lunsky Y,
    3. Wilton AS,
    4. Cobigo V,
    5. Vigod SN
    . Pregnancy in women with intellectual and developmental disabilities. J Obstet Gynaecol Can 2016;38(1):9-16.
  192. 192.
    1. Willis DS,
    2. Wishart JG,
    3. Muir WJ
    . Menopausal experiences of women with intellectual disabilities. J Appl Res Intellect Disabil 2011;24(1):74-85.
  193. 193.
    1. Stein S,
    2. Tepper M
    . Sexuality. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Cham, Switz: Springer; 2016. p. 1365-81.
  194. 194.
    1. Abells D,
    2. Kirkham YA,
    3. Ornstein MP
    . Review of gynecologic and reproductive care for women with developmental disabilities. Curr Opin Obstet Gynecol 2016;28(5):350-8.
  195. 195.
    1. Haveman M,
    2. Heller T,
    3. Lee L,
    4. Maaskant M,
    5. Shooshtari S,
    6. Strydom A
    . Major health risks in aging persons with intellectual disabilities: an overview of recent studies. J Policy Pract Intellect Disabil 2010;7(1):59-69.
  196. 196.
    1. Pfister AA,
    2. Roberts AG,
    3. Taylor HM,
    4. Noel-Spaudling S,
    5. Damian MM,
    6. Charles PD
    . Spasticity in adults living in a developmental center. Arch Phys Med Rehabil 2003;84(12):1808-12.
  197. 197.
    1. Jenkins DW,
    2. Cooper K,
    3. Heigh EG
    . Prevalence of podiatric conditions seen in Special Olympics athletes: a comparison of USA data to an international population. Foot (Edinb) 2015;25(1):5-11. Epub 2014 Oct 5.
  198. 198.
    1. Marks B,
    2. Sisirak J,
    3. Heller T
    . Health matters: the exercise, nutrition, and health education curriculum for people with developmental disabilities. Baltimore, MD: Paul H. Brookes Pub Co; 2010.
  199. 199.
    1. Courtenay K,
    2. Murray A
    . Foot health and mobility in people with intellectual disabilities. J Policy Practi Intellect Disabil 2015;12(1):42-6.
  200. 200.
    1. Jenkins DW,
    2. Cooper K,
    3. O’Connor R,
    4. Watanabe L
    . Foot-to-shoe mismatch and rates of referral in Special Olympics athletes. J Am Podiatr Med Assoc 2012;102(3):187-97.
  201. 201.
    1. Balogh R,
    2. Wood J,
    3. Dobranowski K,
    4. Lin E,
    5. Wilton A,
    6. Jaglal SB,
    7. et al
    . Low-trauma fractures and bone mineral density testing in adults with and without intellectual and developmental disabilities: a population study. Osteoporos Int 2017;28(2):727-32. Epub 2016 Sep 9.
  202. 202.
    1. Petrone LR
    . Osteoporosis in adults with intellectual disabilities. South Med J 2012;105(2):87-92.
  203. 203.
    1. Dreyfus D,
    2. Lauer E,
    3. Wilkinson J
    . Characteristics associated with bone mineral density screening in adults with intellectual disabilities. J Am Board Fam Med 2014;27(1):104-14.
  204. 204.
    1. Jasien J,
    2. Daimon CM,
    3. Maudsley S,
    4. Shapiro BK,
    5. Martin B
    . Aging and bone health in individuals with developmental disabilities. Int J Endocrin 2012;2012:469235.
  205. 205.
    1. Jaffe JS,
    2. Timell AM,
    3. Elolia R,
    4. Thatcher SS
    . Risk factors for low bone mineral density in individuals residing in a facility for the people with intellectual disability. J Intellect Disabil Res 2005;49(6):457-62.
  206. 206.
    1. Robertson J,
    2. Hatton C,
    3. Emerson E,
    4. Baines S
    . Prevalence of epilepsy among people with intellectual disabilities: a systematic review. Seizure 2015;29:46-62. Epub 2015 Mar 30.
  207. 207.
    1. Robertson J,
    2. Hatton C,
    3. Emerson E,
    4. Baines S
    . Mortality in people with intellectual disabilities and epilepsy: a systematic review. Seizure 2015;29:123-33. Epub 2015 Apr 20.
  208. 208.
    The epilepsies: diagnosis and management—clinical guideline [CG137]. London, UK: National Clinical Guideline Centre; 2012. National Institute for Health and Clinical Excellence. Available from: www.nice.org.uk/guidance/cg137. Accessed 2016 Jun 26.
  209. 209.
    1. Chapman M,
    2. Iddon P,
    3. Atkinson K,
    4. Brodie C,
    5. Mitchell D,
    6. Parvin G,
    7. et al
    . The misdiagnosis of epilepsy in people with intellectual disabilities: a systematic review. Seizure 2011;20(2):101-6. Epub 2010 Nov 30.
  210. 210.
    1. Branford D,
    2. Bhaumik S,
    3. Kiani R
    . Epilepsy. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015.
  211. 211.
    1. Whitten E,
    2. Griffiths A
    . Implementing epilepsy guidelines within a learning disability service. Seizure 2007;16(6):471-8. Epub 2007 Apr 27.
  212. 212.
    1. Epilepsy Action [website]
    . Primary care resource pack. Leeds, UK: Epilepsy Action; 2017. Available from: www.epilepsy.org.uk/professional/primary-care/resource-pack. Accessed 2017 Mar 21.
  213. 213.
    1. Kapell D,
    2. Nightingale B,
    3. Rodriguez A,
    4. Lee JH,
    5. Zigman WB,
    6. Schupf N
    . Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Ment Retard 1998;36(4):269-79.
  214. 214.
    1. Beange H,
    2. Lennox N,
    3. Parmenter TR
    . Health targets for people with intellectual disability. J Intellect Dev Disabil 1999;24(4):283-97.
  215. 215.
    1. Cazeau RA,
    2. Kamboj MK
    . Endocrine issues. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 1257-79.
  216. 216.
    1. Bhaumik S,
    2. Branford D,
    3. Barrett M,
    4. Gangadharan SK
    . The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015.
  217. 217.
    1. Visser WE,
    2. de Rijke YB,
    3. van Toor H,
    4. Visser TJ
    . Thyroid status in a large cohort of patients with mental retardation: the TOP-R (thyroid origin of psychomotor retardation) study. Clin Endocrinol (Oxf) 2011;75(3):395-401.
  218. 218.
    1. Balogh RS,
    2. Lake JK,
    3. Lin E,
    4. Wilton A,
    5. Lunsky Y
    . Disparities in diabetes prevalence and preventable hospitalizations in people with intellectual and developmental disability: a population-based study. Diabet Med 2015;32(2):235-42. Epub 2014 Oct 7.
  219. 219.
    1. MacRae S,
    2. Brown M,
    3. Karatzias T,
    4. Taggart L,
    5. Truesdale-Kennedy M,
    6. Walley R,
    7. et al
    . Diabetes in people with intellectual disabilities: a systematic review of the literature. Res Dev Disabil 2015;47:352-74. Epub 2015 Oct 23.
  220. 220.
    1. Queensland Centre for Intellectual and Developmental Disability [website]
    . Diabetes to the point. Brisbane, Aust: University of Queensland; 2016. Available from: https://qcidd.centre.uq.edu.au/resources/diabetes-point. Accessed 2017 Mar 22.
  221. 221.
    1. Taggart L,
    2. Truesdale-Kennedy M,
    3. Scott J
    . Working with people with people with intellectual and developmental disabilities who have diabetes. J Diabetes Nurs 2015;19(5):190-4.
  222. 222.
    1. Cardol M,
    2. Rijken M,
    3. van Schrojenstein Lantman-de Valk H
    . People with mild to moderate intellectual disability talking about their diabetes and how they manage. J Intellect Disabil Res 2012;56(4):351-60. Epub 2011 Sep 29.
  223. 223.
    1. Burton C,
    2. Vaudry W,
    3. Moore D,
    4. Bettinger JA,
    5. Tran D,
    6. Halperin SA,
    7. et al
    . Burden of seasonal influenza in children with neurodevelopmental conditions. Pediatr Infect Dis J 2014;33(7):710-4.
  224. 224.
    1. Smith M,
    2. Peacock G,
    3. Uyeki TM,
    4. Moore C
    . Influenza vaccination in children with neurologic or neurodevelopmental disorders. Vaccine 2015;33(20):2322-7. Epub 2015 Mar 30.
  225. 225.
    1. Yen CF,
    2. Lin JD
    . Factors influencing administration of hepatitis B vaccine to community-dwelling teenagers aged 12–18 with an intellectual disability. Res Dev Disabil 2011;32(6):2943-9. Epub 2011 Jun 8.
  226. 226.
    1. Khasawneh R,
    2. Wallen J,
    3. Davies HD
    . Infectious diseases, immunizations and universal precautions. In: Rubin IL, Merrick J, Greydanus DE, Patel D, editors. Health care for people with intellectual and developmental disabilities across the lifespan. 3rd ed. Cham, Switz: Springer; 2016. p. 1711-28.
  227. 227.
    1. Wilson B,
    2. Jones KB,
    3. Weedon D,
    4. Bilder D
    . Care of adults with intellectual and developmental disabilities: Down syndrome. FP Essent 2015;439:20-5.
  228. 228.
    1. Public Health Agency of Canada
    . Canadian immunization guide: part 3 vaccination of specific populations. Ottawa, ON: Public Health Agency of Canada; 2016.
  229. 229.
    1. Severtson SG,
    2. Hedden SL,
    3. Martins SS,
    4. Latimer WW
    . Patterns of cognitive impairments among heroin and cocaine users: the association with self-reported learning disabilities and infectious disease. J Learn Disabil 2012;45(2):139-50. Epub 2010 Jun 23.
  230. 230.
    1. Cobigo V,
    2. Ouellette-Kuntz H,
    3. Balogh R,
    4. Leung F,
    5. Lin E,
    6. Lunsky Y
    . Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities. J Intellect Disabil Res 2013;57(5):478-88. Epub 2013 Mar 19.
  231. 231.
    1. Ouellette-Kuntz H,
    2. Coo H,
    3. Cobigo V,
    4. Wilton AS
    . Uptake of colorectal cancer screening among Ontarians with intellectual and developmental disabilities. PLoS One 2015;10(2):e0118023.
  232. 232.
    1. Greenwood NW,
    2. Dreyfus D,
    3. Wilkinson J
    . More than just a mammogram: breast cancer screening perspectives of relatives of women with intellectual disability. Intellect Dev Disabil 2014;52(6):444-55.
  233. 233.
    1. Merten JW,
    2. Pomeranz JL,
    3. King JL,
    4. Moorhouse M,
    5. Wynn RD
    . Barriers to cancer screening for people with disabilities: a literature review. Disabil Health J 2015;8(1):9-16. Epub 2014 Jul 1.
  234. 234.
    1. Canadian Task Force on Preventive Health Care [website]
    . CTFPHC guidelines. Calgary, AB: Canadian Task Force on Preventive Health Care; 2016. Available from: http://canadiantaskforce.ca/?content=pcp. Accessed 2016 Nov 30.
  235. 235.
    1. Centre for Developmental Disability Health Victoria, Pap Screen Victoria
    . Pap test: the plain facts. Dandenong, Aust: Centre for Developmental Disability Health Victoria; 2011. Available from: www.papscreen.org.au/downloads/resources/brochures/Pap_tests_the_plain_facts.pdf. Accessed 2016 Nov 30.
  236. 236.
    1. Satgé D,
    2. Sauleau EA,
    3. Jacot W,
    4. Raffi F,
    5. Azéma B,
    6. Bouyat JC,
    7. et al
    . Age and stage at diagnosis: a hospital series of 11 women with intellectual disability and breast carcinoma. BMC Cancer 2014;14:150.
  237. 237.
    1. Canadian Breast Cancer Foundation [website]
    . Be breast aware. Toronto, ON: Canadian Cancer Society; 2016. Available from: www.cbcf.org/ontario/AboutBreastHealth/BeBreastAware/Pages/default.aspx. Accessed 2016 Nov 30.
  238. 238.
    1. Canadian Cancer Society [website]
    . Signs and symptoms of breast cancer. Toronto, ON: Canadian Cancer Society; 2016. Available from: www.cancer.ca/en/cancer-information/cancer-type/breast/signs-and-symptoms/?region=on. Accessed 2017 Oct 25.
  239. 239.
    1. Van de Wouw E,
    2. Evenhuis HM,
    3. Echteld MA
    . Prevalence, associated factors and treatment of sleep problems in adults with intellectual disability: a systematic review. Res Dev Disabil 2012;33(4):1310-32. Epub 2012 Mar 30.
  240. 240.
    1. Heussler HS
    . Management of sleep disorders in neurodevelopmental disorders and genetic syndromes. Curr Opin Psychiatry 2016;29(2):138-43.
  241. 241.
    1. Stores G
    . Sleep and its disorders in children and adolescents with a neurodevelopmental disorder: a review and clinical guide. Cambridge, UK: Cambridge University Press; 2014.
  242. 242.
    1. Wallace RA,
    2. Dalton AJ
    . Clinicians’ guide to physical health problems of older adults with down syndrome. J Dev Disabil 2006;12(1 Suppl 1):1-92.
  243. 243.
    1. Lal C,
    2. White DR,
    3. Joseph JE,
    4. van Bakergem K,
    5. LaRosa A
    . Sleep-disordered breathing in Down syndrome. Chest 2015;147(2):570-9.
  244. 244.
    1. Hulbert-Williams L,
    2. Hastings R,
    3. Owen DM,
    4. Burns L,
    5. Day J,
    6. Mulligan J,
    7. et al
    . Exposure to life events as a risk factor for psychological problems in adults with intellectual disabilities: a longitudinal design. J Intellect Disabil Res 2014;58(1):48-60. Epub 2013 Apr 30.
  245. 245.
    1. Scott HM,
    2. Havercamp SM
    . Mental health for people with intellectual disability: the impact of stress and social support. Am J Intellect Dev Disabil 2014;119(6):552-64.
  246. 246.
    1. Lunsky Y,
    2. Bramston P
    . A preliminary study of perceived stress in adults with intellectual disabilities according to self-report and informant ratings. J Intellect Dev Disabil 2006;31(1):20-7.
  247. 247.
    1. Hartley SL,
    2. MacLean WE Jr.
    . Depression in adults with mild intellectual disability: role of stress, attributions, and coping. Am J Intellect Dev Disabil 2009;114(3):147-60.
  248. 248.
    1. Gilmore L,
    2. Cuskelly M
    . Vulnerability to loneliness in people with intellectual disability: an explanatory model. J Policy Pract Intellect Disabil 2014;11(3):192-9.
  249. 249.
    1. Skotko BG,
    2. Levine SP,
    3. Goldstein R
    . Having a brother or sister with Down syndrome: perspectives from siblings. Am J Med Genet A 2011;155A(10):2348-59. Epub 2011 Sep 9.
  250. 250.
    1. Skotko BG,
    2. Levine SP,
    3. Goldstein R
    . Having a son or daughter with Down syndrome: perspectives from mothers and fathers. Am J Med Genet A 2011;155A(10):2335-47. Epub 2011 Sep 13.
  251. 251.
    1. Skotko BG,
    2. Levine SP,
    3. Goldstein R
    . Self-perceptions from people with Down syndrome. Am J Med Genet A 2011;155A(10):2360-9. Epub 2011 Sep 9.
  252. 252.
    1. National Institute for Health and Care Excellence
    . Mental health problems in people with learning disabilities: prevention, assessment and management—methods, evidence and recommendations: final version. London, UK: British Psychological Society, Royal College of Psychiatrists; 2016. Available from: www.nice.org.uk/guidance/ng54/evidence/full-guideline-2612227933. Accessed 2017 Jan 10.
  253. 253.
    1. Zeedyk SM,
    2. Rodriguez G,
    3. Tipton LA,
    4. Baker BL,
    5. Blacher J
    . Bullying of youth with autism spectrum disorder, intellectual disability, or typical development: victim and parent perspectives. Res Autism Spectr Disord 2014;8(9):1173-83.
  254. 254.
    1. Larkin P,
    2. Jahoda A,
    3. MacMahon K,
    4. Pert C
    . Interpersonal sources of conflict in young people with and without mild to moderate intellectual disabilities at transition from adolescence to adulthood. J Appl Res Intellect Disabil 2012;25(1):29-38. Epub 2011 Nov 3.
  255. 255.
    1. Hermans H,
    2. Evenhuis HM
    . Life events and their associations with depression and anxiety in older people with intellectual disabilities: results of the HA-ID study. J Affect Disord 2012;138(1–2):79-85. Epub 2012 Feb 2.
  256. 256.
    1. Wigham S,
    2. Hatton C,
    3. Taylor JL
    . The effects of traumatizing life events on people with intellectual disabilities: a systematic review. J Ment Health Res Intellect Disabil 2011;4(1):19-39.
  257. 257.
    1. Holland A
    . Disorders of intellectual development: historical, conceptual, epidemiological and nosological overview. In: Woodbury-Smith M, editor. Clinical topics in disorders of intellectual development. London, UK: Royal College of Psychiatrists Publications; 2015. p. 3-21.
  258. 258.
    1. Bradley E,
    2. Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative
    . Guide to understanding behavioural problems and emotional concerns in adults with developmental disabilities (DD) for primary care providers and caregivers. In: Sullivan W, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 67-75. Available from: surreyplace.ca/ddprimarycare/tools/mental-health/guide-to-understanding-behaviour-abc/. Accessed 2018 Feb 16.
  259. 259.
    1. Levitas AS,
    2. Gilson SF
    . Predictable crises in the lives of people with mental retardation. Mental Health Aspects Dev Disabil 2001;4(3):89-100.
  260. 260.
    1. Bradley E,
    2. Baroness Hollins S,
    3. Korossy M,
    4. Levitas A
    . Adjustment disorder in disorders of intellectual development. In: Casey P, editor. Adjustment disorders: from controversy to clinical practice. Oxford, UK: Oxford University Press; 2018.
  261. 261.
    1. Bradley EA,
    2. Goody R,
    3. McMillan S
    . A to Z of disciplines that may contribute to the multi- and interdisciplinary work as applied to mood and anxiety disorders. In: Hassiotis A, Barron DA, Hall I, editors. Intellectual disability psychiatry: a practical handbook. Chichester, UK: Wiley-Blackwell; 2009. p. 257-63.
  262. 262.
    1. Buckles J,
    2. Luckasson R,
    3. Keefe E
    . A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability, 2003–2010. J Ment Health Res Intellect Disabil 2013;6(3):181-207.
  263. 263.
    1. Alexander RT,
    2. Branford D,
    3. Devapriam J
    . Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines. London, UK: Royal College of Psychiatrists; 2016. Available from: www.rcpsych.ac.uk/pdf/FR_ID_09_for_website.pdf. Accessed 2016 Apr 22.
  264. 264.
    1. Sheehan R,
    2. Hassiotis A,
    3. Walters K,
    4. Osborn D,
    5. Strydom A,
    6. Horsfall L
    . Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ 2015;351:h4326.
  265. 265.
    1. Bradley E,
    2. Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative
    . Auditing psychotropic medication therapy. In: Sullivan WE, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 88-9. Available from: surreyplace.ca/ddprimarycare/tools/mental-health/auditing-psychotropic-medication-therapy/. Accessed 2018 Feb 16.
  266. 266.
    1. Branford D,
    2. Bhaumik S
    . Aggressive behaviour. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015. p. 147-52.
  267. 267.
    1. Branford D,
    2. Bhaumik S
    . Physical and health monitoring. In: Bhaumik S, Branford D, Barret M, editors. The Frith prescribing guidelines for adults with learning disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015. p. 21-30.
  268. 268.
    1. Deb S,
    2. Kwok H,
    3. Bertelli M,
    4. Salvador-Carulla L,
    5. Bradley E,
    6. Torr J,
    7. et al
    . International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry 2009;8(3):181-6.
  269. 269.
    1. Glover G,
    2. Williams R,
    3. Branford D,
    4. Avery R,
    5. Chauhan U,
    6. Hoghton M,
    7. et al
    . Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England. London, UK: Public Health England, Clinical Practice Research Datalink; 2015. Available from: webarchive.nationalarchives.gov.uk/20160805132945/http://www.nhsiq.nhs.uk/media/2671718/psychotropic_medication_and_people_with_learning_disabilities_or_autism__3_.pdf. Accessed 2018 Feb 16.
  270. 270.
    1. Tyrer P,
    2. Oliver-Africano PC,
    3. Ahmed Z,
    4. Bouras N,
    5. Cooray S,
    6. Deb S,
    7. et al
    . Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet 2008;371(9606):57-63.
  271. 271.
    1. Sheehan R,
    2. Hassiotis A
    . Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: a systematic review. Lancet Psychiatry 2017;4(3):238-56. Epub 2016 Nov 10.
  272. 272.
    1. Lunsky Y,
    2. Khuu W,
    3. Tadrous M,
    4. Vigod S,
    5. Cobigo V,
    6. Gomes T
    . Antipsychotic use with and without comorbid psychiatric diagnosis among adults with intellectual and developmental disabilities. Can J Psychiatry 2017. 706743717727240. Epub ahead of print.
  273. 273.
    1. Cooper SA,
    2. McLean G,
    3. Guthrie B,
    4. McConnachie A,
    5. Mercer S,
    6. Sullivan F,
    7. et al
    . Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis. BMC Fam Pract 2015;16:110.
  274. 274.
    1. Fletcher R,
    2. Barnhill J,
    3. Cooper S
    . Diagnostic manual—intellectual disability (DM-ID 2): a textbook of diagnosis of mental disorders in persons with Intellectual disability. 2nd ed. Kingston, NY: NADD Press; 2017.
  275. 275.
    1. Royal College of Psychiatrists
    . DC-LD (diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation). London, UK: Gaskell; 2001.
  276. 276.
    1. Bradley E,
    2. Lunsky Y,
    3. Palucka A,
    4. Homitidis S
    . Recognition of intellectual disabilities and autism in psychiatric inpatients diagnosed with schizophrenia and other psychotic disorders. Adv Ment Health Intellect Disabil 2011;5(6):4-18.
  277. 277.
    1. Cooper SA,
    2. Smiley E,
    3. Morrison J,
    4. Allan L,
    5. Williamson A,
    6. Finlayson J,
    7. et al
    . Psychosis and adults with intellectual disabilities. Prevalence, incidence, and related factors. Soc Psychiatry Psychiatr Epidemiol 2007;42(7):530-6. Epub 2008 Oct 29.
  278. 278.
    1. Lunsky Y,
    2. Bradley E,
    3. Durbin J,
    4. Koegl C
    . A comparison of patients with intellectual disability receiving specialised and general services in Ontario’s psychiatric hospitals. J Intellect Disabil Res 2008;52(11):1003-12. Epub 2008 Mar 11.
  279. 279.
    1. Myers B
    . Psychotic disorders in people with mental retardation: diagnostic and treatment issues. Ment Health Aspects Develop Disabil 1999;2(1):1-11.
  280. 280.
    1. Myers R
    . Recognizing psychosis in persons with intellectual disabilities who do not use speech. Hertfordshire, UK: University of Hertfordshire; 2010. Available from: www.intellectualdisability.info/diagnosis/articles/recognizing-psychosis-in-persons-with-intellectual-disabilities-who-do-not-use-speech. Accessed 2016 Jan 7.
  281. 281.
    1. Mileviciute I,
    2. Hartley SL
    . Self-reported versus informant-reported depressive symptoms in adults with mild intellectual disability. J Intellect Disabil Res 2015;59(2):158-69.
  282. 282.
    1. Cuthill FM,
    2. Espie CA,
    3. Cooper SA
    . Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability. Individual and carer supplement versions. Br J Psychiatry 2003;182:347-53.
  283. 283.
    1. Mindham J,
    2. Espie CA
    . Glasgow Anxiety Scale for people with an Intellectual Disability (GAS-ID): development and psychometric properties of a new measure for use with people with mild intellectual disability. J Intellect Disabil Res 2003;47(Pt 1):22-30.
  284. 284.
    1. Hodapp RM,
    2. Dankner NA,
    3. Dykens EM
    . Behavioural phenotypes/genetic syndromes. In: Hemmings C, Bouras N, editors. Psychiatric and behavioral disorders in intellectual and developmental disabilities. 3rd ed. Cambridge, UK: Cambridge University Press; 2016. p. 196-206.
  285. 285.
    1. Levitas A,
    2. Finucane B,
    3. Simon E,
    4. Schuster M,
    5. Kates W,
    6. Olszewski AK,
    7. et al
    . Behavioral phenotypes and neurodevelopmental disorders. In: Fletcher R, Barnhill J, Cooper S, editors. Diagnostic manual—intellectual disability (DM-ID 2): a textbook of diagnosis of mental disorders in persons with intellectual disability. 2nd ed. Kingston, NY: NADD Press; 2017. p. 35-74.
  286. 286.
    1. Bradley E,
    2. Loh A,
    3. Grier E,
    4. Korossy M,
    5. Cameron D
    . Health watch table: autism spectrum disorder (ASD). Toronto, ON: Surrey Place Centre; 2014. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/austism-spectrum-disorder. Accessed 2017 Oct 20.
  287. 287.
    1. Tao L,
    2. Temple V,
    3. Casson I,
    4. Kirkpatrick SML
    . Health watch table: fetal alcohol spectrum disorder (FASD). Toronto, ON: Surrey Place Centre; 2013. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/fetal-alcohol-spectrum-disorder. Accessed 2017 Oct 20.
  288. 288.
    1. Forster-Gibson C,
    2. Berg J
    . Health watch table: Williams syndrome. Toronto, ON: Surrey Place Centre; 2013. Available from: surreyplace.ca/ddprimarycare/health-watch-tables/williams-syndrome. Accessed 2017 Oct 20.
  289. 289.
    1. Hubert J,
    2. Hollins S
    . Men with severe learning disabilities and challenging behaviour in long-stay hospital care: qualitative study. Br J Psychiatry 2006;188:70-4.
  290. 290.
    1. Mevissen L,
    2. de Jongh A
    . PTSD and its treatment in people with intellectual disabilities. A review of the literature. Clin Psychol Rev 2010;30(3):308-16. Epub 2009 Dec 13.
  291. 291.
    1. McCarthy J,
    2. Blanco RA,
    3. Gaus VL,
    4. Razza NJ,
    5. Tomasulo DJ
    . Trauma- and stressor-related disorders. In: Fletcher R, Barnhill J, Cooper S, editors. Diagnostic manual—intellectual disability (DM-ID 2): a textbook of diagnosis of mental disorders in persons with intellectual disability. 2nd ed. Kingston, NY: NADD Press; 2017. p. 353-400.
  292. 292.
    1. Hemmings C
    . Schizophrenia spectrum disorders. In: Tsakanikos E, McCarthy JM, editors. Handbook of psychopathology in intellectual disability: research, practice, and policy. New York, NY: Springer; 2014.
  293. 293.
    1. Deb S,
    2. Matthews T,
    3. Holt G,
    4. Bouras N
    . Practice guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disability. Cheapside, UK: Pavilion; 2001. Available from: www.slam.nhs.uk/media/199170/practiceguidelines.pdf. Accessed 2018 Feb 16.
  294. 294.
    1. Bradley EA,
    2. Goody R,
    3. McMillan S,
    4. Levitas A
    . Common mental disorders (depression, anxiety, OCD, PTSD). In: Hassiotis A, Barron DA, Hall I, editors. Intellectual disability psychiatry: a practical handbook. Chichester, UK: Wiley-Blackwell; 2009. p. 51-66.
  295. 295.
    1. Summers J,
    2. Boyd K,
    3. Reid J,
    4. Adamson J,
    5. Habjan B,
    6. Gignac V,
    7. et al
    . The interdisciplinary mental health team. In: Griffiths DM, Stavrakaki C, Summers J, editors. Dual diagnosis: an introduction to the mental health needs of persons with developmental disabilities. Sudbury, ON: Habilitative Mental Health Resource Network; 2002. p. 325-57.
  296. 296.
    1. Read J,
    2. Fosse R,
    3. Moskowitz A,
    4. Perry B
    . The traumagenic neurodevelopmental model of psychosis revisited. Neuropsychiatry 2014;4(1):65-79.
  297. 297.
    1. Longden E,
    2. Madill A,
    3. Waterman MG
    . Dissociation, trauma, and the role of lived experience: toward a new conceptualization of voice hearing. Psychol Bull 2012;138(1):28-76. Epub 2011 Nov 14.
  298. 298.
    1. Linszen MMJ,
    2. Brouwer RM,
    3. Heringa SM,
    4. Sommer IE
    . Increased risk of psychosis in patients with hearing impairment: review and meta-analyses. Neurosci Biobehav Rev 2016;62:1-20. Epub 2015 Dec 30.
  299. 299.
    1. Boardman L,
    2. Bernal J,
    3. Hollins S
    . Communicating with people with intellectual disabilities: a guide for general psychiatrists. Adv Psychiatr Treat 2014;20(1):27-36.
  300. 300.
    1. Royal College of Speech and Language Therapists
    . Five good communication standards. London, UK: Royal College of Speech and Language Therapists; 2013. Available from: www.rcslt.org/news/docs/good_comm_standards. Accessed 2018 Feb 16.
  301. 301.
    1. Azimi K,
    2. Modi M,
    3. Hurlbut J,
    4. Lunsky Y
    . Occurrence of medical concerns in psychiatric out-patients with intellectual disabilities. J Ment Health Res Intellect Disabil 2016;9(1–2):24-35.
  302. 302.
    1. Melville CA,
    2. Johnson PC,
    3. Smiley E,
    4. Simpson N,
    5. Purves D,
    6. McConnachie A,
    7. et al
    . Problem behaviours and symptom dimensions of psychiatric disorders in adults with intellectual disabilities: an exploratory and confirmatory factor analysis. Res Dev Disabil 2016;55:1-13. Epub 2016 Mar 25.
  303. 303.
    1. Ji NY,
    2. Findling RL
    . Pharmacotherapy for mental health problems in people with intellectual disability. Curr Opin Psychiatry 2016;29(2):103-25.
  304. 304.
    1. Bradley E,
    2. Cheetham T
    . The use of psychotropic medication for the management of problem behaviours in adults with intellectual disabilities living in Canada. Adv Ment Health Intellect Disabil 2010;4(3):12-26.
  305. 305.
    1. Eady N,
    2. Courtenay K,
    3. Strydom A
    . Pharmacological management of behavioral and psychiatric symptoms in older adults with intellectual disability. Drugs Aging 2015;32(2):95-102.
  306. 306.
    1. Emerson E,
    2. Einfeld SL
    . Pharmacotherapy. In: Emerson E, Einfeld SL, editors. Challenging behaviour. 3rd ed. Cambridge, UK: Cambridge University Press; 2011. p. 94-101.
  307. 307.
    1. Scheifes A,
    2. Walraven S,
    3. Stolker JJ,
    4. Nijman HL,
    5. Egberts TC,
    6. Heerdink ER
    . Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs. Res Dev Disabil 2016:49-50, 13-21.
  308. 308.
    1. De Kuijper G,
    2. Mulder H,
    3. Evenhuis H,
    4. Visser F,
    5. Hoekstra PJ
    . Effects of controlled discontinuation of long-term used antipsychotics on weight and metabolic parameters in individuals with intellectual disability. J Clin Psychopharmacol 2013;33(4):520-4.
  309. 309.
    1. Glover G,
    2. Bernard S,
    3. Branford D,
    4. Holland A,
    5. Strydom A
    . Use of medication for challenging behaviour in people with intellectual disability. Br J Psychiatry 2014;205(1):6-7.
  310. 310.
    1. Balogh RS,
    2. Wood J,
    3. Lunsky Y,
    4. Ouellette-Kuntz HMJ,
    5. Wilton AS,
    6. Cobigo V,
    7. et al
    . Chronic disease management. In: Lunsky Y, Klein-Geltink JE, Yates EA, editors. Atlas on the primary care of adults in Ontario. Toronto, ON: Centre for Addiction and Mental Health, Institute for Clinical Evaluative Sciences; 2013. p. 92-116. Available from: www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e. Accessed 2015 Dec 8.
  311. 311.
    1. Bradley A,
    2. Lofchy J
    . Learning disability in the accident and emergency department. Adv Psychiatr Treat 2005;11(1):45-57.
  312. 312.
    1. Bell R
    . Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff. Tizard Learn Disabil Rev 2012;17(2):57-63.
  313. 313.
    1. Hemmings C,
    2. Obousy S,
    3. Craig T
    . Mental health crisis information for people with intellectual disabilities. Adv Ment Health Intellect Disabil 2013;7(3):135-42.
  314. 314.
    1. Lunsky Y,
    2. Balogh R,
    3. Cairney J
    . Predictors of emergency department visits by persons with intellectual disability experiencing a psychiatric crisis. Psychiatr Serv 2012;63(3):287-90.
  315. 315.
    1. Bradley E,
    2. Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative
    . Crisis prevention and management plan. In: Sullivan W, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editor. Tools for the primary care of people with developmental disabilities. Toronto, ON: Surrey Place Centre, MUMS Guidelines Clearinghouse; 2011. p. 77-81. Available from: surreyplace.ca/ddprimarycare/tools/mental-health/crisis-prevention-and-management-plan/. Accessed 2018 Feb 16.
  316. 316.
    1. Lunsky Y,
    2. Perry A,
    3. Lake J,
    4. Lee J
    . Improving emergency care for adults with developmental disabilities: a toolkit for providers. Toronto, ON: Portico Network, Centre of Addiction and Mental Health; 2016. Available from: www.porticonetwork.ca/documents/38160/99698/Emergency+Care+Toolkit/3e3a9dca-6dc0-474e-aed3-34d8201656c7. Accessed 2017 Apr 9.
  317. 317.
    1. Lin E,
    2. Balogh R,
    3. McGarry C,
    4. Selick A,
    5. Dobranowski K,
    6. Wilton AS,
    7. et al
    . Substance-related and addictive disorders among adults with intellectual and developmental disabilities (IDD): an Ontario population cohort study. BMJ Open 2016;6(9):e011638. 2016-011638.
  318. 318.
    1. Van Duijvenbode N,
    2. VanDerNagel JE,
    3. Didden R,
    4. Engels RC,
    5. Buitelaar JK,
    6. Kiewik M,
    7. et al
    . Substance use disorders in individuals with mild to borderline intellectual disability: current status and future directions. Res Dev Disabil 2015;38:319-28. Epub 2015 Jan 9.
  319. 319.
    1. Pezzoni V,
    2. Kouimtsidis C
    . Screening for alcohol misuse within people attending a psychiatric intellectual disability community service. J Intellect Disabil Res 2015;59(4):353-9. Epub 2014 Oct 29.
  320. 320.
    1. To WT,
    2. Neirynck S,
    3. Vanderplasschen W,
    4. Vanheule S,
    5. Vandevelde S
    . Substance use and misuse in persons with intellectual disabilities (ID): results of a survey in ID and addiction services in Flanders. Res Dev Disabil 2014;35(1):1-9. Epub 2013 Nov 8.
  321. 321.
    1. Taggart L,
    2. Chaplin E
    . Substance misuse. In: Tsakanikos E, McCarthy JM, editors. Handbook of psychopathology in intellectual disability: research, practice, and policy. New York, NY: Springer; 2014. p. 205-23.
  322. 322.
    1. Public Health England
    . Substance misuse and people with learning disabilities: making reasonable adjustments to services. London, UK: Public Health England; 2017. Available from: www.ndti.org.uk/uploads/files/Substance_Misuse_RA_Report.pdf. Accessed 2017 Nov 13.
  323. 323.
    1. Slayter E,
    2. Steenrod SA
    . Addressing alcohol and drug addiction among people with mental retardation in nonaddiction settings: a need for cross-system collaboration. J Soc Work Pract Addict 2009;9(1):71-90.
  324. 324.
    1. Slayter EM
    . Understanding and overcoming barriers to substance abuse treatment access for people with mental retardation. J Soc Work Disabil Rehabil 2008;7(2):63-80.
  325. 325.
    1. Day C,
    2. Lampraki A,
    3. Ridings D,
    4. Currell K
    . Intellectual disability and substance use/ misuse: a narrative review. J Intellect Disabil Offending Behav 2016;7(1):25-34.
  326. 326.
    1. Dodd K,
    2. Faculty for People with Intellectual Disabilities of the British Psychological Society Division of Clinical Psychology, Intellectual Disabilities Faculty of the Royal College of Psychiatrists
    . Dementia and people with intellectual disabilities: guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. Leicester, UK: British Psychological Society; 2015. Available from: www.bps.org.uk/system/files/Public%20files/rep77_dementia_and_id.pdf. Accessed 2018 Feb 16.
  327. 327.
    1. Prasher VP
    . Practical dementia care for adults with Down syndrome or with intellectual disabilities. Hauppauge, NY: Nova Science Publishers, Inc; 2014.
  328. 328.
    1. Herron D
    . Understanding dementia: people with learning disabilities finding out and raising awareness together. West Midlands, UK: Black Country Partnership, NHS; 2014. Available from: www.hee.nhs.uk/sites/default/files/documents/3%20-%20Understanding%20dementia%20for%20web.pdf. Accessed 2018 Feb 16.
  329. 329.
    1. Sheehan R,
    2. Ali A,
    3. Hassiotis A
    . Dementia in intellectual disability. Curr Opin Psychiatry 2014;27(2):143-8.
  330. 330.
    1. Alvarez N
    . Dementia and people with intellectual and developmental disabilities. Int J Child Health Hum Dev 2015;8(4):449-69.
  331. 331.
    1. Gangadharan SK,
    2. Jesu AJM
    . Dementia in people with intellectual disability. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, UK: John Wiley & Sons Inc; 2015. p. 63-75.
  332. 332.
    1. Jokinen N,
    2. Janicki MP,
    3. Keller SM,
    4. Mccallion P,
    5. Force LT
    . Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. J Policy Pract Intellect Disabil 2013;10(1):1-24.
  333. 333.↵
    1. National Task Group on Intellectual Disabilities and Dementia Practices
    . NTG-EDSD screening instrument. Prospect, KY: American Academy of Developmental Medicine and Dentistry; 2013. Available from: http://aadmd.org/sites/default/files/NTG-EDSD-ElectronicForm.pdf. Accessed 2017 Oct 25.
  334. 334.↵
    1. Sullivan WF
    , editor. Special issue on primary care of adults with intellectual and developmental disabilities. Can Fam Physician 2018;64(Suppl 2):S1-78.
Back to top

In this issue

Print
Download PDF
Article Alerts
Email Article
Citation Tools
Respond to this article
Primary care of adults with intellectual and developmental disabilities
William F. Sullivan, Heidi Diepstra, John Heng, Shara Ally, Elspeth Bradley, Ian Casson, Brian Hennen, Maureen Kelly, Marika Korossy, Karen McNeil, Dara Abells, Khush Amaria, Kerry Boyd, Meg Gemmill, Elizabeth Grier, Natalie Kennie-Kaulbach, Mackenzie Ketchell, Jessica Ladouceur, Amanda Lepp, Yona Lunsky, Shirley McMillan, Ullanda Niel, Samantha Sacks, Sarah Shea, Katherine Stringer, Kyle Sue, Sandra Witherbee
Canadian Family Physician Apr 2018, 64 (4) 254-279;
Twitter logo Facebook logo Mendeley logo

Jump to section

Related Articles

Cited By...

More in this TOC Section

Similar Articles