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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.

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Ontario caregiver recognition act

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
Outline

  • Objectives and key provisions of the proposed OCRA

  • Definition of key terms

    • Allied caregiver

    • Informal Health Information Custodian

  • Overview of proposed OCRA

  • Rationale and justifications

    • Best practice approach

    • Federal and provincial mental health strategies

  • The Vision

Family Council 2013 Annual General Meeting


Objectives and key provisions
Objectives and Key Provisions

Family Council 2013 Annual General Meeting


Objectives of the proposed ontario caregiver recognition act ocra
Objectives of the proposed Ontario Caregiver Recognition Act (OCRA)

  • Establish a legislative framework to recognize

    • The roles and contributions of caregivers

    • The right of allied caregivers to access health information of the Person they care for, while respecting the right to confidentiality of the Person

    • Broader aspects of recognition and supports to caregivers

Family Council 2013 Annual General Meeting


Key provisions of proposed ocra
Key Provisions of (proposed) OCRA (OCRA)

  • Designate allied caregivers as informal health information custodians

  • Develop procedures to safeguard right of allied caregivers to access health information of the Person and right of the Person to maintain confidentiality

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

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

Family Council 2013 Annual General Meeting


Definition of key terms
Definition of key Terms (OCRA)

Family Council 2013 Annual General Meeting


Key definitions
Key definitions (OCRA)

  • The Person: An individual living with mental health and addictions issues

  • Caregiver: An individual within the Person’s social network who provides care and support without financial compensation

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

Family Council 2013 Annual General Meeting


Key definitions1
Key definitions (OCRA)

  • Health Information Custodian (HIC)

    • 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)

  • Informal HIC

    • 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

Family Council 2013 Annual General Meeting


Allied caregiver as informal health information custodian hic
Allied caregiver as informal Health Information Custodian (HIC)

  • “…access to their family member’s care plan

  • 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)

  • 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
Overview of proposed OCRA (HIC)

Family Council 2013 Annual General Meeting


Confidentiality a major barrier to partnership in recovery

Person living with mental health and addiction issues (HIC)

One-way input in partnership

Two-way input in partnership

Barrier to partnership due to confidentiality

Recovery

Mental health professionals

Family Caregiver

Confidentiality: A major barrier to partnership in Recovery

Family Council 2013 Annual General Meeting


Allied family caregivers as informal health information custodians
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


Mandatory procedure to designate allied caregivers

Mandatory interview with Person to identify allied caregiver Custodians

Yes

Regular review of allied caregiver designation

No

Revocation of allied caregiver status

Mandatory procedure to designate allied caregivers

Family Council 2013 Annual General Meeting


Establish an ocra council to monitor progress
Establish an OCRA Council to monitor progress Custodians

Family Council 2013 Annual General Meeting


Safeguards to balance the rights of allied caregivers and the person
Safeguards to balance the rights of allied caregivers and the person

Mandatory interview with Person

Mandatory interview with family

Explicit and informed consent required

Victim of abuse by family

Yes

No

Consent not required

Duty to warn/protect

Yes

No

Share health information with family

Family as allied caregiver

Person provides consent

No

Yes

Yes

No

Access to health information on a “need to know” basis

Mandatory periodic review of Person’s consent

Yes

Family Council 2013 Annual General Meeting


Goal partnership through proposed ocra to promote recovery

Two-way input in partnership enabled through OCRA the person

Goal: Partnership through (proposed) OCRA to promote recovery

Person living with mental health problems and illnesses

Recovery

Mental health professionals

Allied family caregiver

Family Council 2013 Annual General Meeting


The vision

Bill ??? the person

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

OCRA

The Vision

Family Council 2013 Annual General Meeting


Rationale
Rationale the person

Family Council 2013 Annual General Meeting


More responsibilities less rights
More responsibilities, less rights the person

  • Compared to mental health professionals, caregivers have

    • Less support from the system

    • Less rights to health information

    • More burden in the care of their ill relatives (Canadian Mental Health Association, undated)

Family Council 2013 Annual General Meeting


Between a rock
Between a rock… the person

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

  • 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


And a hard place
And a hard place the person

  • while 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
Justifications the person

Family Council 2013 Annual General Meeting


Best practice approach
Best practice approach the person

  • Carer Recognition Act (Government of Western Australia, 2004)

  • Carer Recognition Policy (Queensland Government, 2007)

  • Caring for Carers (UK Department of Health, 2008)

  • Manitoba Caregiver Recognition Act (2011)

Family Council 2013 Annual General Meeting


Manitoba caregiver recognition act 2011
Manitoba Caregiver Recognition Act (2011) the person

  • “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

  • 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
the federal government the person

Family Council 2013 Annual General Meeting


The standing senate committee report 2006
The Standing Senate Committee Report (2006) the person

  • Recommendation #2

    • 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


The standing senate committee report 20061
The Standing Senate Committee Report (2006) the person

  • Recommendation #3

    • 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


The standing senate committee report 20062
The Standing Senate Committee Report (2006) the person

  • 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


Mental health strategy for canada 2012
Mental Health Strategy for Canada (2012) the person

  • Priority 2.1

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

Family Council 2013 Annual General Meeting


Mental health strategy for canada 20121
Mental Health Strategy for Canada (2012) the person

  • Priority 3.5

    • Caregivers need increased access to financial supports like tax credits, caregiver allowances, and respite care, as well as to workplace policies—such as allowing caregiver leaves and flexible hours—that would ease their burden (Mental Health Commission of Canada, 2012, p. 55)

Family Council 2013 Annual General Meeting


The ontario government
The Ontario government the person

Family Council 2013 Annual General Meeting


Selection committee final report to ontario legislature 2010
Selection Committee Final Report to Ontario Legislature (2010)

  • Recommendation # 21

    • A task force to incorporating adequate representation from caregivers to propose changes in involuntary admission and treatment

Family Council 2013 Annual General Meeting


Selection committee final report to ontario legislature 20101
Selection Committee Final Report to Ontario Legislature (2010)

  • Recommendation # 22

    • A task force to investigate and propose changes to PHIPA to ensure caregivers have access to personal health information of their ill relatives

Family Council 2013 Annual General Meeting


Selection committee final report to ontario legislature 20102
Selection Committee Final Report to Ontario Legislature (2010)

  • Recommendation #16

    • Increased availability of respite care to allow family members the time and freedom to pursue personal, social and recreational endeavours in order to maintain their own mental health

Family Council 2013 Annual General Meeting


Accountability a two way street
Accountability: A two-way street (2010)

  • MOHLTC:

    • All mental health and addiction programs and services are based on the best available evidence from lived experience, practice and research (The Minister’s advisory group on the 10-year mental health and addictions strategy, 2010, p. 17)

    • Ontario will build on effective mental health and addictions programs and services with the best available evidence from lived experience, practice and research. Services must improve quality of life in a sustainable way (Ministry of Health and Long-term Service, 2011. p. 9)

Family Council 2013 Annual General Meeting


The vision1
The vision (2010)

Family Council 2013 Annual General Meeting


Safeguards to balance the rights of allied caregivers and the person1
Safeguards to balance the rights of allied caregivers and the person

Mandatory interview with Person

Mandatory interview with family

Explicit and informed consent required

Victim of abuse by family

Yes

No

Consent not required

Duty to warn/protect

Yes

No

Share health information with family

Family as allied caregiver

Person provides consent

No

Yes

Yes

No

Access to health information on a “need to know” basis

Mandatory periodic review of Person’s consent

Yes

Family Council 2013 Annual General Meeting


Establish an ocra council to monitor progress1
Establish an OCRA Council to monitor progress the person

Family Council 2013 Annual General Meeting


The next step
The next step… the person

  • Minister of Health to introduce a Government Bill

    • Family Council

    • CAMH

    • Other Family Councils and mental health organizations within Ontario

    • OCSWSSW

  • Contact MPP to introduce a private member’s public bill

    • Caregivers (Legislative Research Service, 2011)

Family Council 2013 Annual General Meeting


The vision2

Bill ??? the person

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

OCRA

The Vision

Family Council 2013 Annual General Meeting


References
References the person

  • Canadian Mental Health Association (undated). Families of People with Mental Illness: Current Dilemmas and Strategies for Change, as quoted in Family Mental Health Alliance (2006). Caring together: Families as partners in the mental health and addiction system.

  • Health Canada (2004). Informal/Family Caregivers in Canada Caring for Someone with a Mental Illness: Final report.

  • Legislative Research Service (2011). How an Ontario Bill Becomes Law: A guide for legislators and the public. Legislative Assembly ofOntario.

  • Mental Health Commission of Canada. (2012). Changing directions, changing lives: The mental health strategy for Canada. Calgary, AB: Author.

  • The Minister’s advisory group on the 10-year mental health and addictions strategy (2010). Respect, recovery, resilience: Recommendations for Ontario's mental health and addictions strategy.

Family Council 2013 Annual General Meeting


References1
References the person

  • Ministry of Health and Long-term Service (2011). Open minds, healthy minds: Ontario's comprehensive mental health and addictions strategy.

  • Select committee on mental health and addictions (2010). Navigating the journey to wellness: The comprehensive mental health and addictions action plan for Ontarians. Canada: Legislative Assembly of Ontario.

  • The Standing Senate Committee on Social Affairs, Science and Technology, (2006). Out of the shadows at last: transforming mental health, mental illness and addiction services in Canada.

  • Szmukler, G. I., & Bloch, S. (1997). Family involvement in the care of people with psychoses. An ethical argument. British Journal of Psychiatry, 17(11), 401-405.

Family Council 2013 Annual General Meeting