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  • IDD Palliative Toolkit
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CONTACT

tools

note: Additional Resource Links are provided in Each Module

Identify & Screen

Health Changes 

  • STOP & WATCH (early warning signs of condition change) 
  • HELP Tool (Behaviours that Challenge) 
  • NTG-EDSD (Dementia Onset Screening) 
  • IDD-Frailty Screening Tool (coming soon)


Pain & Symptoms

  • CPS-NAID (Observational Pain Screening) 
  • DisDAT (Individualized Distress Cue Identification) 

Observe & Assess

Person-Centre  

  • Communicate CARE (Tip Sheet for Health Assessment) 


Holistic Assessment

  • Domains of Care: Holistic Considerations for PWIDD (IDD supplement to CHPCA’s Domains of Issues Associated with Illness and Bereavement)


Early Identification

  • PALLI TOOL (Used with permission)
  • SPICT-4-ALL (DS team)
  • Gold Standard Framework Proactive Identification Guidance (GSF - PIG) (Clinicians) 
  • IDD PCN Supplement - Earlier Identification (IDD supplement to GSF-PIG)
  • Supports Intensity Scale (SIS-A)

Plan & Manage

  Decision Making/Consent

  • Supported Decision-Making Tool 
  • About My Health 
  • ACP for PWIDD: A Guide for Caregivers
  • My ACP Guide, Easy Read Version
  • Decision Making in Healthcare for PWIDD


Communication

  •  Breaking Bad News 
  • Communicating with people with intellectual disabilities: A guide for general psychiatrists 

Circle of Support

Caregiver Distress

  • Burden Scale for Family & Caregivers 
  • NCCN Distress Thermometer 

Additional Resources

  • Ontario Health, Palliative Care Toolkit
  • Palliative Care for People with Learning Disabilities (PCPLD)
  • How to Break Bad News to People with Intellectual Disabilities: A Guide for Carers and Professionals (by Irene Tuffrey-Wijne)
  • Books Beyond Words (Book series on various topics by S. Hollins et al.)

Primary Care Resources

  •  2018 Canadian Consensus Guidelines, Primary Care of Adults with IDD
  • Developmental Disabilities Primary Care Program (DDPCP)




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