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  • Ontario Caregiver Recognition Act

    The Right of Caregivers to Access Health Information of Relatives with Mental Health and Addiction Issues

    Billy Chan, Ph.D., R.S.W. Law and Mental Health Program

    Centre for Addiction and Mental Health Toronto, Ontario Canada

  • Outline o Objectives and key provisions of the proposed

    OCRA o Definition of key terms

    n Allied caregiver n Informal Health Information Custodian

    o Overview of proposed OCRA o Rationale and justifications

    n Best practice approach n Federal and provincial mental health strategies

    o The Vision

    February 28, 2013 2 Family Council 2013 Annual General Meeting

  • OBJECTIVES AND KEY PROVISIONS

    February 28, 2013 3 Family Council 2013 Annual General Meeting

  • February 28, 2013 4

    Objectives of the proposed Ontario Caregiver Recognition Act (OCRA)

    o Establish a legislative framework to recognize n The roles and contributions of caregivers n The right of allied caregivers to access

    health information of the Person they care for, while respecting the right to confidentiality of the Person

    n Broader aspects of recognition and supports to caregivers

    Family Council 2013 Annual General Meeting

  • February 28, 2013 5

    Key Provisions of (proposed) OCRA o Designate allied caregivers as informal health

    information custodians o Develop procedures to safeguard right of

    allied caregivers to access health information of the Person and right of the Person to maintain confidentiality

    o Establish OCRA Council to oversee implementation and monitoring of the Act

    o Periodic review and consultation to expand recognition and support to caregiver

    Family Council 2013 Annual General Meeting

  • DEFINITION OF KEY TERMS

    February 28, 2013 6 Family Council 2013 Annual General Meeting

  • February 28, 2013 7

    Key definitions o The Person: An individual living with

    mental health and addictions issues oCaregiver: An individual within the

    Persons social network who provides care and support without financial compensation

    oAllied caregiver: A designated caregiver who provides support to, and often live with the Person

    Family Council 2013 Annual General Meeting

  • Key definitions o Health Information Custodian (HIC)

    n a person or organization who has custody or control of personal health information as a result of their formal (usually paid) duties stipulated in PHIPA (2004)

    o Informal HIC n A designated caregiver in the social network

    who has knowledge of health information of the Person as a result of providing unpaid care and support to the Person

    February 28, 2013 8 Family Council 2013 Annual General Meeting

  • February 28, 2013 9

    Allied caregiver as informal Health Information Custodian (HIC)

    o access to their family members care plan

    o to be included respectfully by physicians and others in discussions of how and by whom that plan will be implemented (Senate Committee Report, 2006, p. 29)

    o The need to know principle (Szmukler & Bloch, 1997) to assist them in their caring and supportive role.

    Family Council 2013 Annual General Meeting

  • OVERVIEW OF PROPOSED OCRA

    February 28, 2013 10 Family Council 2013 Annual General Meeting

  • Person living with mental health and

    addiction issues

    Family Caregiver

    Mental health professionals

    Recovery

    February 28, 2013 11

    Confidentiality: A major barrier to partnership in Recovery

    One-way input in partnership

    Barrier to partnership due to confidentiality

    Two-way input in partnership

    Family Council 2013 Annual General Meeting

  • February 28, 2013 12

    Allied family caregivers as informal Health Information Custodians

    Ontario Caregiver Recognition Act

    Allied family caregiver as informal HICs

    Access to health information of the Person

    Family Council 2013 Annual General Meeting

  • February 28, 2013 13

    Mandatory procedure to designate allied caregivers

    Mandatory interview with Person to identify allied caregiver

    Regular review of allied caregiver designation

    Revocation of allied caregiver status

    Yes

    No

    Family Council 2013 Annual General Meeting

  • February 28, 2013 14

    Establish an OCRA Council to monitor progress

    OCRA

    Council

    Implementation of OCRA

    Standardized training

    Family Council 2013 Annual General Meeting

  • February 28, 2013 15

    Safeguards to balance the rights of allied caregivers and the person

    Share health information with family

    No

    Explicit and informed consent required

    Consent not required

    Access to health information on a need to know basis

    Yes

    Family as allied caregiver

    Person provides consent

    Duty to warn/protect

    Mandatory interview with Person

    Mandatory interview with family

    Yes

    Yes

    Yes

    Yes

    No

    Victim of abuse by family

    No

    No

    Mandatory periodic review of Persons consent

    Family Council 2013 Annual General Meeting

  • February 28, 2013 16

    Goal: Partnership through (proposed) OCRA to promote recovery

    Two-way input in partnership enabled through OCRA

    Person living with mental

    health problems and illnesses

    Allied family caregiver

    Mental health professionals

    Recovery

    Family Council 2013 Annual General Meeting

  • February 28, 2013 17

    The Vision o Bill ??? o Caregiver

    Recognition Day, Ontario: First (weekday) of (Month), 201?

    Family Council 2013 Annual General Meeting

  • RATIONALE

    February 28, 2013 18 Family Council 2013 Annual General Meeting

  • February 28, 2013 19

    More responsibilities, less rights

    oCompared to mental health professionals, caregivers have n Less support from the system n Less rights to health information n More burden in the care of their ill

    relatives (Canadian Mental Health Association, undated)

    Family Council 2013 Annual General Meeting

  • February 28, 2013 20

    Between a rock

    o First, they (caregivers) must suffer with their loved ones through their daily hardships and use their limited personal resources to try to alleviate them

    o Second, they must contend with a mental health system that often excludes them from involvement in the information-gathering and decision-making processes

    Family Council 2013 Annual General Meeting

  • February 28, 2013 21

    And a hard place

    owhile simultaneously leaving them to serve as the fail-safe mechanism to provide unlimited, unpaid care, filling in the cracks that open when any part of the so-called system fails (The Standing Senate Committee, 2006, p. 34)

    Family Council 2013 Annual General Meeting

  • JUSTIFICATIONS

    February 28, 2013 22 Family Council 2013 Annual General Meeting

  • February 28, 2013 23

    Best practice approach oCarer Recognition Act (Government of

    Western Australia, 2004) oCarer Recognition Policy (Queensland

    Government, 2007) oCaring for Carers (UK Department of

    Health, 2008) oManitoba Caregiver Recognition Act

    (2011) Family Council 2013 Annual

    General Meeting

  • February 28, 2013 24

    Manitoba Caregiver Recognition Act (2011) o These caregivers provide a valuable

    service to their families and to their communities, and in many cases, it comes at a physical, emotional and sometimes financial cost to individuals and families

    o Our legislation recognizes both the value of their contribution and the need to work with caregivers to provide a network of supports

    Family Council 2013 Annual General Meeting

  • THE FEDERAL GOVERNMENT

    February 28, 2013 25 Family Council 2013 Annual General Meeting

  • February 28, 2013 26

    The Standing Senate Committee Report (2006) oRecommendation #2

    n That health care professionals take an active role in promoting communication between persons living with mental illness and their families

    Family Council 2013 Annual General Meeting

  • February 28, 2013 27

    The Standing Senate Committee Report (2006) oRecommendation #3

    n That health care professionals have discretion to release personal health information, without consent, in circumstances of clear, serious and imminent danger for the purposes of warning third parties and protecting the safety of the patient

    Family Council 2013 Annual General Meeting

  • February 28, 2013 28

    The Standing Senate Committee Report (2006) o That this discretion be governed by a

    clearly defined legal standard set out in legislation, and subject to review by privacy commissioners and the courts (The Standing Senate Committee Report, 2006, p. 69)

    Family Council 2013 Annual General Meeting

  • February 28, 2013 29

    Mental Health Strategy for Canada (2012)

    o Priority 2.1

    n It is critical that they (families) have access to the information and resources they need to sustain themselves, and that their voices be heard in the mental health system (Mental Health Commission of Canada, 2012, p. 29)

    Family Council 2013 Annual General Meeting

  • February 28, 2013 30

    Mental Health Strategy for Canada (2012)

    o Priority 3.5

    n Caregivers need increased access to financial supports like tax credits, caregiver