What is the issue?

Adults with developmental disabilities (DD) have complex health care needs yet experience great difficulties in accessing proper health care.

Direct support professionals (DSPs) work directly with people with DD to support them in day-to-day life, including navigating and interacting with the health care system. However, facilitating good health care remains a challenge for DSPs.

How is H-CARDD helping?

Through partnership Vita Community Living Services, a toolkit was developed for direct support professionals to better support people with IDD when it comes to their health, as well as their health care. The aims of this toolkit were to:

• increase knowledge about the health care needs and of adults with DD
• helping DSPs to effectively communicate with health care providers.

Completing the tools also helped adults with DD become more aware, prepared, and involved in their health care visits. The tools provided important information to health care providers, which improved communication with the patient and the staff. The tools also helped to identify all of the health issues to address, and generally improved the quality of the health care visit.

The Nuts and Bolts of Health Care Toolkit is available here and at the Nuts and Bolts project website. You will find information that is relevant for DSPs, as well as for the people they support.
  

Family Matters Toolkit

Adapted from the Nuts and Bolts Toolkit, this Family Matters Toolkit is designed for caregivers who are interested in improving the health and health care of a family member with intellectual and developmental disabilities (IDD). Some of resources included are tools developed by the H-CARDD program as well as curated resources from Surrey Place's Developmental Disabilities Primary Care Program and others. These tools can be used together, or as stand-alone materials, depending on your needs, goals and existing resources. We encourage you to use whichever pieces of this toolkit you feel are helpful.

The Azrieli Adult Neurodevelopmental Centre

The Azrieli Adult Neurodevelopmental Centre is the first research and education centre in Canada dedicated to improving care for adults with neurodevelopmental disabilities and mental health challenges.  The centre includes several scientists who work closely with trainees, patient and family advisors to study and develop ways to improve the mental health of this population. Scientists at the centre are running several research projects focused on mental health and disability.

More Information

Summary: Get a quick overview of this study in the research snapshot The Nuts and Bolts of Health Care: Training Direct Support Professionals to be Effective Health Care Advocates. Snapshots are easy to understand two page summaries of H-CARDD research findings.

Tools for DSPs: This toolkit was developed for direct support professionals who are interested in improving the health and health care of the people they support. You can use the resources included in this toolkit as a whole, or as stand-alone materials, depending on the needs, goals and existing resources in your agency. Visit www.nutsandbolts.toolkits.com to learn more.

Newsletter: H-CARDD contributes regularly to a newsletter with information for direct support workers published by Vita community services and HANDS Family Help Network. Read a special issue: The Nuts and Bolts of Health Care Project.