Ontario Caregiver Recognition Act - amhnc.ca Caregiver Recognition Act.pdf · Ontario Caregiver...
Transcript of Ontario Caregiver Recognition Act - amhnc.ca Caregiver Recognition Act.pdf · Ontario Caregiver...
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
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OBJECTIVES AND KEY PROVISIONS
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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
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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
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DEFINITION OF KEY TERMS
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Key definitions o The Person: An individual living with
mental health and addictions issues o Caregiver: An individual within the
Person’s social network who provides care and support without financial compensation
o Allied caregiver: A designated caregiver who provides support to, and often live with the Person
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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
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Allied caregiver as informal Health Information Custodian (HIC)
o “…access to their family member’s 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.
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OVERVIEW OF PROPOSED OCRA
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Person living with mental health and
addiction issues
Family Caregiver
Mental health professionals
Recovery
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Confidentiality: A major barrier to partnership in Recovery
One-way input in partnership
Barrier to partnership due to confidentiality
Two-way input in partnership
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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
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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
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Establish an OCRA Council to monitor progress
OCRA
Council
Implementation of OCRA
Standardized training
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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 Person’s consent
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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
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The Vision o Bill ??? o Caregiver
Recognition Day, Ontario: First (weekday) of (Month), 201?
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RATIONALE
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More responsibilities, less rights
o Compared 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)
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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…
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And a hard place
o 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)
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JUSTIFICATIONS
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Best practice approach o Carer Recognition Act (Government of
Western Australia, 2004) o Carer Recognition Policy (Queensland
Government, 2007) o Caring for Carers (UK Department of
Health, 2008) o Manitoba Caregiver Recognition Act
(2011) Family Council 2013 Annual
General Meeting
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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”
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THE FEDERAL GOVERNMENT
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The Standing Senate Committee Report (2006) o Recommendation #2
n That health care professionals take an active role in promoting communication between persons living with mental illness and their families
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The Standing Senate Committee Report (2006) o Recommendation #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
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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)
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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)
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Mental Health Strategy for Canada (2012)
o Priority 3.5
n 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)
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THE ONTARIO GOVERNMENT
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Selection Committee Final Report to Ontario Legislature (2010)
o Recommendation # 21
n A task force to incorporating adequate representation from caregivers to propose changes in involuntary admission and treatment
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Selection Committee Final Report to Ontario Legislature (2010)
o Recommendation # 22
n A task force to investigate and propose changes to PHIPA to ensure caregivers have access to personal health information of their ill relatives
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Selection Committee Final Report to Ontario Legislature (2010)
o Recommendation #16
n 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
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Accountability: A two-way street o MOHLTC:
n 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)
n 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)
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THE VISION
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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 Person’s consent
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Establish an OCRA Council to monitor progress
OCRA
Council
Implementation of OCRA
Standardized training
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The next step… o Minister of Health to introduce a
Government Bill n Family Council n CAMH n Other Family Councils and mental health
organizations within Ontario n OCSWSSW
o Contact MPP to introduce a private member’s public bill n Caregivers (Legislative Research Service, 2011)
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The Vision o Bill ??? o Caregiver
Recognition Day, Ontario: First (weekday) of (Month), 201?
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References o 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.
o Health Canada (2004). Informal/Family Caregivers in Canada Caring for Someone with a Mental Illness: Final report.
o Legislative Research Service (2011). How an Ontario Bill Becomes Law: A guide for legislators and the public. Legislative Assembly of Ontario.
o Mental Health Commission of Canada. (2012). Changing directions, changing lives: The mental health strategy for Canada. Calgary, AB: Author.
o 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.
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References o Ministry of Health and Long-term Service (2011). Open minds,
healthy minds: Ontario's comprehensive mental health and addictions strategy.
o 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.
o 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.
o 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.
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