Enhancing Health Care for Adults with Intellectual and Developmental Disabilities: Toolkit for Primary Care Providers

Mother with adult son during medical exam with doctor

The IDD Toolkit is a website that provides information for the primary care providers of adults with intellectual and developmental disabilities (IDD). The toolkit has been recently updated to reflect revised consensus guidelines led by the Developmental Disabilities Primary Care Program of Ontario, Canada. The toolkit offers best-practice tools and a wealth of information regarding specific medical and behavioral concerns of adults with IDD, including resources for patients and families. One key component of the revisions is a greater focus on the role of the self-advocate in their own health care.

The updated IDD Toolkit is now available online at www.iddtoolkit.org.

“We are very excited to launch this new iteration of the IDD Toolkit” said Jeffrey Neul, M.D., Ph.D., Annette Schaffer Eskind Chair and director of the Vanderbilt Kennedy Center. “We know that most health care professionals have little to no training in IDD and need easy-to-find, evidence-based resources and tools that can help them work with their patients with IDD. It was wonderful to work with the WITH Foundation to make this revised version possible, and we hope it proves to be an essential tool in the repertoire of health care professionals.”

The toolkit equips primary care providers in the United States to care for adults with IDD, whether they are transitioning from pediatric health care to adult health care or they need a new primary care clinician. The IDD Toolkit also has Health Watch Tables for several specific developmental disabilities and includes relevant information on behavioral and mental health issues. The updated toolkit is much more accessible and has many revised and new tools.

“Resources like the IDD Toolkit are incredibly valuable for ensuring that adults with intellectual and developmental disabilities receive the culturally competent health care that they deserve,” said Ryan Easterly, executive director of the WITH Foundation. “We have been honored to support the Vanderbilt Kennedy Center’s team to work on this important resource.”

Revised Tools:

  • Communicating CARE—Be Clear, Attentive, Responsive, and Engaging with the patient, a tool with detailed explanations of adaptive functioning and communication levels, and an expanded look at decision-making supports/guardianship, and informed consent
  • A more in-depth and inclusive Health Check form that looks at issues prevalent in patients with intellectual and developmental disabilities, and how to approach some sensitive topics
  • Several revised behavioral and mental health items, including initial management of a behavioral crisis, a risk assessment tool, and an updated crisis management plan form

New Tools:

  • Frequently asked questions on genetic assessments and when a psychological assessment might be helpful
  • New sections on epilepsy, and multiple monitoring charts (e.g., bowel movement, weight monitoring, and blood sugar)
  • New behavioral and mental health items, including a hospital form that outlines the specific needs of the patient, information on identifying symptoms and signs of mental distress in adults with IDD, a tool for self-advocates to complete on ways for them to cope with stressful situations.

The IDD Toolkit update is a project of the Vanderbilt Kennedy Center, done with extensive cooperation of Surrey Place of Toronto, Ontario, and funded by the WITH Foundation.

The toolkit is an adaption for U.S. use of tools developed by the Canadian team, Tools for the Primary Care of Adults with Intellectual and Developmental Disabilities (2023) with Surrey Place. These tools support primary care clinicians implementing the Canadian consensus guidelines on the primary care of adults with IDD.

A diverse advisory committee of health care clinicians, researchers, faculty, family members, self-advocates, and a Surrey Place representative provided review and recommendations on the updated website and tools for use in the U.S. health care system.

“We are thrilled that, internationally, clinicians find the Canadian guidelines and our toolkit helpful as an evidence-based practice support,” said Heidi Diepstra, Ph.D., lead of the Developmental Disabilities Primary Care Program. “Adapting clinical tools to local practice settings is extremely important to facilitate uptake of clinical guideline recommendations. Ultimately, our goal with the toolkit is to improve health outcomes for people with intellectual and developmental disabilities in Canada, and beyond.”

If you have questions about the toolkit, email Janet Shouse at janet.shouse@vumc.org.

Sign up for updates and relevant information about the toolkit here.

Top photo by Adobe Stock

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