Adults with intellectual or other developmental disabilities face a cascade of health challenges. They often:
- have complex or difficult-to-treat medical conditions
- have difficulty accessing health care, either physically or financially
- may receive inadequate or inappropriate health care
- may have difficulties expressing their symptoms and pain
- receive little attention to wellness, preventive care, and health promotion
Yet these adults deserve quality, patient-centered health care as well as the general population.
All tools except for the Autism Health Watch Table and updates to the Down Syndrome Health Watch Table were developed in Ontario, Canada, to complement the Primary care of adults with developmental disabilities: Canadian consensus guidelines (DD Guidelines). The tools were developed by the Developmental Disabilities Primary Care Program (DDPCP) with support and funding from the Ontario Ministry of Health, the Ministry of Children, Community and Social Services, and Surrey Place, Toronto, Ontario.
Development Process of Canadian Tools and Acknowledgements. Accessed July 2021.
The primary care practice tools were first published in 2011 by the Developmental Disabilities Primary Care Initiative, in collaboration with the Medication Use Management Services (MUMS) in Tools for the Primary Care of People with Developmental Disabilities. The 2019 version was developed with input from family physicians, primary care providers, and caregivers with experience in caring for people with intellectual and developmental disabilities.
The tools promote preventive care actions that might easily be overlooked in adults with IDD, such as, screening, immunizations, and medication reviews. Types of tools included are:
- point-of-care forms providing guidance for healthcare decision making, health checks, and mental health assessments
- monitoring charts for tracking various health issues that provide a basis for developing and evaluating protocols to interventions
- patient and family/support person tools that facilitate health care interactions
Surrey Place offers versions of the tools on its website at www.surreyplace.on.ca. Accessed February 2024.
See References.
The IDD Toolkit is a project of the Vanderbilt Kennedy Center for Research on Human Development, in partnership with Surrey Place in Toronto, Ontario. The VKC received funding from the WITH Foundation, which focuses its efforts on improving health care for adults with intellectual and developmental disabilities.
The IDD Toolkit’s activities and contributions to the Tools include:
- The revisions of the website
- The Autism Health Watch Table
- Updates to the Down Syndrome Health Watch Table
- The Advisory Committee of U.S. health care clinicians, family members, and self-advocates
- The adaptation of the tools for use in the United States
- Fillable forms
- Resources for U.S. providers and families
Our hope is that this website will give virtually every U.S. primary care provider electronic access to best practice tools, and thus will enable each clinician to more readily serve adults with intellectual or other developmental disabilities.