Palliative Toolkit for People with Intellectual and Development Disability (IDD)

Intellectual and Developmental Disability (IDD) is an umbrella term for disabilities involving significant limitations in cognitive and adaptive functioning. Many of these are life-limiting and result in significant health issues.

Why is this Important?

• Age: The median age of death for people living with IDD (PWIDD) is 55-64 years, and “research indicates that 98.7% of PWIDD have multimorbidity of three or more illness, compared to 23% in the general population”.
• Tools: Our traditional standard palliative care tools often do not translate appropriately, as they lack IDD specificity and were not included in the validation of tools such as PPS, Clinical Frailty Scale, etc. We need to apply an understanding of the clinical complexity and appropriate tools to provide a quality palliative approach to care for PWIDD.

Intellectual and Developmental Disability Palliative Care Resource Guide and Toolkit: A Knowledge-to-Action Guide

Enter the IDD PCN, a group of like-minded individuals who came together in “recognition of the need for a strategy to address the significant lack of equitable access to a palliative approach to care, that is proactive, reliable, and responsive for people with IDD.”

In late August 2026, The IDD PCN released their highly anticipated toolkit: The toolkit is divided into clear, easy-to-navigate documents and modules that build on existing palliative care knowledge and address the unique needs of people with IDD.

• Executive Summary
• How to Use
  • Module A: Essential Conversations
  • Module B: Domain of Care (including Domains of Care: Holistic Considerations for People Living with IDD)
  • Module C: Care Pathways & Integrated Care Team Model
  • Module D: Earlier Identification Guidance (includes detailed exploration of clinical considerations for this population)
  • Module E: Loss, Grief & Bereavement
  • Module F: Pain Identification Guidance
  • Module G: Symptom Consideration Guidance
• Tools

Caring for PWIDD requires providers to expand our current understanding and practice of a Palliative Approach to Care in many different ways. (Discussed in Module D)

A few of these key considerations include:

• Premature and rapid biological aging
• Lifelong frailty and disability
• The importance of establishing baseline and monitoring for decline rather than presence of deficits
• Common diagnoses and trajectories
• Domains of care
• Appropriate screening and assessment tools

New/Adapted Tools

• Domains of Care: Holistic Considerations for People Living with IDD
• Intellectual and Developmental Disability Supplement (to PIG Tool)
• IDD Frailty Screening Tool (coming soon)
  • ** In addition to a one-source connection to many existing tools

Download Tip of the Month

PDF –  October 2026 –  Palliative Toolkit for People with Intellectual and Development Disability (IDD)

Reference

IDD PCN. (2026). IDD palliative care resource guide and toolkit. https://iddpcn.org/

Upcoming Tip

November 2026 – Trauma-Informed Care