Legislation, Policies and Programs that Support Family
Caregivers in Canadian Jurisdictions and Selected
International Jurisdictions
November 2015
Acknowledgements
The Change Foundation acknowledges the important work of the Canadian Caregiver
Coalition and the Canadian Home Care Association whose resources served as an
essential reference for the completion of this paper. The Foundation is indebted to
Fatimah Atcha, a Research Intern at The Change Foundation, who undertook the
background research and drafting of this paper.
The Change Foundation welcomes updates and additions within the scope of this paper.
Introduction
The Change Foundation’s strategic goal is to improve the experience of family
caregivers as they help their family member transition through and interact with
Ontario’s health and community care systems1. Through collaboration and partnership
with family caregivers2, providers and system leaders, the Foundation is committed to
making a valuable contribution at the interface between family caregivers and providers
of health and community care.
The Foundation recognizes the importance of advocating for legislation, policies and
programs to support family caregivers. Its strategic focus is to improve collaboration
between caregivers and providers. The Foundation plans to invest in innovative
initiatives where caregivers and providers work together as part of a care team. We may
find these innovations in jurisdictions outside Ontario. Accordingly, it will be important
to understand the social context in which these innovations operate—are there
legislated supports or benefits? Is there formal recognition of the caregiver role?
This paper describes existing legislation, policies and programs designed to support
family caregivers at the federal, provincial and territorial levels, as well as in a limited
number of international jurisdictions, namely the United States, the United Kingdom,
Australia and New Zealand. The international jurisdictions were chosen based on their
1
See Out of the Shadows and into the Circle: partnering with family caregivers to shift Ontario’s healthcare system.
2
The term family caregiver is used throughout this paper and refers to family, friends and neighbours who provide
the vast majority of care, support and enrichment to those who have health-related needs. “Carer” is the common
term in international jurisdictions.
2
notable initiatives to support family caregivers. This paper describes initiatives in the
following three areas:

Formal recognition—formal legislation to recognize the contribution of caregivers as
an integral part of the delivery of health care or to define who is considered a
caregiver.

Employment and financial supports—employment benefits or social programs that
allow caregivers to maintain financial independence or security.

Respite and health supports—innovative supports that allow caregivers to maintain
and promote their own physical, mental and emotional wellbeing.
The paper includes: (i) highlights of key legislation or initiatives from various
jurisdictions, (ii) descriptions of legislation, policies and programs for each jurisdiction,
including links (where available) to access more information, and (iii) a summarizing
chart of initiatives (Appendix 1).
I.
Highlights
Formal recognition

In Canada, there is no federal legislation recognizing the contribution of family
caregivers.

At the provincial and territorial levels, only Manitoba has enacted a Caregiver
Recognition Act (2011), which establishes an annual Caregiver Recognition Day, and
requires caregiver consultations and bi-annual progress reports.

Most provinces have a formal policy that recognizes the role and contribution of
family caregivers. Quebec’s home care policy has the broadest definition of caregiver
and formally recognizes the caregivers’ needs as separate from the needs of care
recipients.

In the US, Oklahoma passed its Caregiver, Advise, Record, Enable (CARE) Act in 2014,
requiring hospitals and rehabilitation facilities to inform designated lay caregivers
when a patient is being discharged and to consult with the caregiver on aftercare
requirements. Eleven other US states have enacted or will enact the same law by
January 2016.

England’s first caregiver-recognition legislation was passed in 1995 and was
replaced by the Care Act of 2014. The Act includes expanded requirements for
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health authorities to assess caregivers, integrate them into health services provision
and support their well-being.

Scotland’s Carers Bill, introduced in the Parliament in March 2015, contains
provisions for carer assessments, support plans, and the establishment of local
eligibility criteria.

In Australia, the Caregiver Recognition Act (2010) formed the basis for the National
Carer Strategy of 2011. By 2012, all states and territories had caregiver recognition
legislation.

New Zealand does not have legislation to formally recognize caregivers; in 2014 the
Carers’ Strategy Action Plan 2014-2018, developed in consultation with caregivers,
was launched.
Employment and financial supports

Canada’s Employment Insurance Act entitles employees to six weeks of
Compassionate Care benefits if they have to be away from work to care for an ill
family member; this will be extended to six months of leave by 2016. The Canada
Labour Code entitles employees to job-protected Compassionate Care Leave for
eight weeks. The Canadian Revenue Agency allows caregivers to claim nonrefundable tax credits. Veteran Affairs offers a tax-free benefit for family caregivers
of Canada’s veterans.

At the provincial level Alberta became, in 2014, the last province to incorporate a
Compassionate Care Leave into its Employment Standards Code; all provinces now
allow job-protected leave from eight to 12 weeks with varying definitions of a ‘family
member’. Some provinces have provisions for additional unpaid leave—these
include British Columbia’s short-term five day leave, a 37-week unpaid leave for a
critically ill child in Manitoba and Ontario, and Ontario’s eight week Family Caregiver
Leave.

Nova Scotia has the only caregiver benefit program in Canada; it provides a monthly
benefit to caregivers. The program has eligibility requirements for both the caregiver
and the care recipient, and the benefits are means-tested.

Manitoba and Quebec are the only provinces that provide a refundable tax credit to
caregivers.

In the United Kingdom, the Employment Act gives all UK caregivers a statutory and
legal right to balance work and care. The Carer’s Allowance is the main benefit
program for all UK residents, providing a weekly benefit to caregivers. As with the
4
Nova Scotia program, there are eligibility requirements for both the caregiver and
the care recipient, and the benefits are means-tested. Interestingly, Carers UK
estimated that over 365,000 eligible caregivers are not claiming the benefit.

Scotland established a ‘Carer Positive’ program to incentivize and recognize
employers that incorporate caregiver-friendly workplace policies.
Respite and health supports

At the provincial level in Canada, a range of programs and services support
caregivers.

In the US, the Administration on Aging focuses its resources for caregivers on
coordination of services, network improvement and information access. The Aging
and Disability Resource Centre Program (ADRC)—referred to as the “No Wrong
Doors System”—serves as the single point of entry into long-term supports and
services for older adults, people with disabilities and their caregivers. It is designed
to allow easy navigation and information awareness for patients and caregivers. The
National Family Caregiver Support Program provides grants to states to fund
support services for family caregivers.

In the UK, National Health Service (NHS) England operates a Carers Direct Hotline
providing information on carer assessment, financial and employment supports, and
can also connect caregivers with their local health authorities or specialist services.

The Scottish Government funds the Short Breaks Fund, managed by Shared Care of
Scotland, which provides funds to third-sector (non-governmental) organizations to
reach out and provide respite support to caregivers.
II.
Descriptions
CANADA
Federal Government
Recognition and Definition
There is no federal legislation to recognize the contribution of family caregivers.
5
Employment and Financial Supports:
The Employment Insurance Act (1996) and Employment Insurance Regulations entitles
Canadian employees to Compassionate Care Benefits to a maximum of six weeks.
Caregivers must qualify for the benefit. They must be providing care or support to a
family member who may be at risk of death within 26 weeks and they must have
accumulated 600 hours of insured work within the preceding 52 week period of the
leave. On average, the benefit is 55 percent of average insurable earnings to a maximum
amount of $49,500. In April 2015, the federal government announced an expansion to
the program with $37-million of additional funding. By January 1st, 2016, eligible
employees will be entitled to six months of benefits.
The Employment Insurance Act also entitles employees to Insurance for Parents of
Critically Ill Children. Employees may receive benefits for up to 35 weeks during a 52week period if they must be absent from work to care for a child who has a life
threatening illness or injury (the program does not apply for children whose normal
state of health is one of chronic illness). Employees are eligible for the insurance as long
as they have accumulated 600 hours of insured earnings within a 52-week window and,
as a result of providing support to their child, have experienced a 40 percent decrease in
their regular, weekly earnings.
Caregivers may be eligible for tax credits through the Canadian Revenue Agency (CRA).
In 2012, the Family Caregiver Amount, a non-refundable tax credit, was introduced. The
caregiver must maintain a dwelling with their care recipient (or dependent) and the
recipient must be 18 years or older and dependent on the caregiver due to a physical or
mental impairment. The Family Caregiver Amount is not a standalone tax credit and
must be claimed along with the spouse or common-law partner amount, the amount for
an eligible dependent, the amount for infirm dependents age 18 or older, or the caregiver
amount. Parents or guardians may also claim a non-refundable Amount for Infirm
Dependents age 18 or older to a maximum of $6,589, including the $2,058 of the family
caregiver amount (values for 2014 tax year). The dependent child or grandchild must
have physical or mental function impairment and cannot have earned more than
$13,196 of net income for the tax year.
6
In March 2015, the Minister of Veteran Affairs announced the Family Caregiver Benefit
Relief, a tax-free benefit for family caregivers of Canada’s veterans. By the year 2020, an
estimated 350 caregivers to Canadian veterans will be eligible under this new benefit to
receive a $7,238 grant to purchase relief services.
Respite and Health Support
Home care services are not publicly insured through the Canada Health Act; most home
and community care services are delivered by provincial, territorial and some municipal
governments. The federal government delivers home care services to on-reserve First
Nations, Inuit in designated communities, Canadian Armed Forces and veterans, Royal
Canadian Mounted Police and federal inmates.
British Columbia
Recognition and Definition:
No provincial legislation recognizes the role and contribution of family caregivers. The
Home and Community Care Policy recognizes the role of the caregiver, along with the
patient, as part of the care team. The Home and Community Care Policy Manual defines
caregivers as the client’s family and friends who provide support, care and other
assistance. It requires health care professionals to develop an individualized care plan in
collaboration with the client, the caregiver, the family physician and, as appropriate,
other members of the health care team. It allows health authorities to approve respite
for caregivers after a clinical assessment of need. The Choices in Support for
Independent Living program stipulates exceptional circumstances in which a family
member can be paid for providing home and community care services; an immediate
family member is not eligible unless the health authority makes an exception.
Employment and Financial Supports:
The Employment Standards Act (1996) allows a short-term and a long-term leave for
family members in a caregiving role. The Family Responsibility Leave entitles employees
up to five days of unpaid leave during an employment year to “meet the responsibilities
to the care or health of any other member of the employee's immediate family.” The
7
Compassionate Care Leave, requires employers to allow employees up to eight weeks
unpaid leave to care for a family member who is significantly ill and facing a significant
risk of death within 26 weeks.
Respite and Health Support
The Ministry of Health subsidizes a number of home and community care services
including Adult Day Services, Caregiver Relief or Short-Term Residential Care Services.
The Ministry of Children and Family Development runs the At Home Program, intended
to assist families with the extraordinary costs of caring for a child with disabilities. The
program’s Respite Benefit is a means-tested benefit for families to purchase respite
services for home or another location.
In March 2013, the Health Minister announced increased funding to support the
Alzheimer Society of British Columbia’s First Link program, adding $2-million to the $1million of annual funding provided to the Society since 2010. The First Link program is
designed to connect patients with dementia, or their family caregivers, to community
supports and services as soon as possible after diagnosis. The program was highlighted
in the 2012 Provincial Dementia Action Plan as an innovative community-based initiative
that supports families affected by dementia.
Alberta
Recognition and Definition
There is no formal recognition of family caregivers through provincial legislation. The
provincial Home Care policy recognizes the contribution of family caregivers in each
client’s program.
Employment and Financial Supports
In February 2014, Alberta was the last province to incorporate a Compassionate Care
Leave into its Employment Standards Code (2000). Employees are entitled to eight
weeks of unpaid leave after working for an employer for a 52-week period. The
employee must provide documentation that his or her family member is facing a
8
significant risk of death within 26 weeks. The definition of family is broad; it includes
family members of the employee’s partner and any “person to whom the employee is
not related but considers to be like a close relative.”
Respite and Health Supports
Home Care Client Managers can offer support services (e.g., information, skills training
and respite care) to assessed family caregivers. Alberta Health Services runs a Family
Caregiver Centre with the Calgary Health Trust, a first of its kind in Alberta. The Centre,
which serves the Calgary Zone (population 1.5-million, one of five designated zones in
Alberta) connects family caregivers to health supports and services, runs education
programs and provides a library of relevant materials. The initiative developed in 2000
when family caregivers indicated a need for better information, coordinated service
delivery, and support for their caregiving role.
Saskatchewan
Recognition and Definition
There is no provincial legislation to recognize the role and contribution of family
caregivers.
The provincial Home Care policy recognizes the contribution of family caregivers as
significant in client case management, incorporating two principles: “recognize and
respond to clients’ and caregivers’ needs and expectations” and “respect the role of
families, other caregivers and community resources in planning and implementing care
for the client.”
Employment and Financial Support
The Saskatchewan Employment Act (2013) entitles employees up to eight weeks unpaid
leave to care for a family member with a serious medical condition or who is facing a
significant risk of death within 26 weeks from the time of the leave. Employees are not
entitled to take more than two leaves within a 52-week period. The Home Care policy
outlines exceptional circumstances under which family caregivers may be compensated
for the care they provide; exceptions are based on availability of supports in the vicinity
9
and whether the caregiver holds the required qualification and training.
Respite and Health Supports:
The Homemaking Component of the Home Care Policy Manual lists respite care as a
service to be provided by Continuing Care Assistants or Home Care Aides. The program
provides respite services to primary caregivers so they can complete everyday tasks or
chores.
Manitoba
Recognition and Definition:
In 2011, the Legislative Assembly of Manitoba passed the Caregiver Recognition Act.
Manitoba is the only province to formally recognize, in legislation, the contributions of
caregivers to society. The Act increases awareness of the caregiver and proclaims the
first Tuesday in April as Caregiver Recognition Day. As well, the Minister must produce a
report on caregivers every two years to account for consultations with caregivers and
progress made in increasing supports for them. In 2012, the Manitoba Seniors and
Healthy Ageing Secretariat appointed a Caregiver Advisory Committee to identify
challenges in the provincial health care system for caregivers and to discuss possible
solutions with stakeholders. In 2013, the Minister of Healthy Living, Seniors and
Consumer Affairs produced the first Caregiver Recognition Act Report, which presented
the results of extensive consultation with caregivers and profiled achievements that
included a Caregiver Guide distributed to 10,000 Manitobans, establishment of an
Interdepartmental Working Group, and enhancements of supports to employees within
the province. The Manitoba Caregiver Consultation targeted employees of the Manitoba
civil service, employees of the Brandon Health Authority and caregivers for seniors with
addiction and/or dementia (total of 400 self-selected caregivers). The caregivers
expressed a need for better system navigation and self-identification strategies, and
enhanced training for social and care workers in treating caregivers with respect and
dignity.
Employment and Financial Supports
10
The Employment Standards Code (1998) entitles employees to two types of unpaid leave
that pertain to a caregiving role. The Compassionate Care Leave entitles employees up
to eight weeks unpaid leave as long as they have been employed with the employer for
30 days. The Critically Ill Child Leave entitles employees to up to 37 weeks unpaid leave
to care for a critically ill child who requires care or support.
The Primary Caregiver Tax Credit, introduced in 2008, is for caregivers in the province
who have been designated as a primary caregiver by a care recipient, provide Level 2
care3 for recipients in a private home within the province, and do not receive other
financial compensation for the care they provide. The credit is refundable and is not
income-tested. In April 2015, this refundable tax credit was increased by 10 per cent from $1,275 to $1,400 annually. Caregivers can claim the credit for up to three care
recipients to a maximum of $4,200.
The Self and Family Managed Care program under Home Care Manitoba established
conditions for family members to receive funds for providing assessed services to home
care clients. One condition is that the Regional Health Authority cannot otherwise
provide a home care worker to meet the needs of the client because of geographic,
cultural or linguistic barriers.
Respite and Health Supports
Respite is available through the Manitoba Home Care Program. In-home respite for a
short period of time may be arranged through the program and longer respite in
alternate care settings may also be arranged for a service fee.
Caregiver services and resources are available through community programs and nonprofit organizations. In 2012, the province committed $555,000 annually for three years
to the Alzheimer’s Society of Manitoba to deliver and expand the First Links program.
Rupert’s Land Caregiver Services offers services to Winnipeg caregivers over the age of
55; services include support groups, transportation services, short respite breaks and
telephone support. Other organizations provide services and support related to specific
3
The Manitoba Home Care Program uses a standardized tool to assess residents called the Dependency
Assessment Supplement. A resident is ranked on their ability to perform in six activities of daily living. Level 2
indicates that the resident scores a combination of minimal, maximum, or partial dependence in all six activities.
11
illnesses or chronic conditions (e.g., Cancer Care Manitoba, Huntington Disease
Resource Centre, ALS Society of Manitoba).
Ontario
Recognition and Definition
On November 5th, 2015 the Family Caregiver Act was introduced as a private member’s
bill and has had first reading in the provincial Legislature. The Act proposes that the
first Tuesday in April in each year be proclaimed as Family Caregiver Day. The proposed
legislation requires 2nd and 3rd reading, a legislative vote and Royal assent before it
becomes law. The Client Services Policy Manual for the province’s Community Care
Access Centres (CCACs) specifies caregiver support services as a key area of service
delivery. These services include counselling and information to caregivers who are
undergoing severe stress or mental health degradation as a result of their caregiving
role.
Employment and Financial Supports:
The Employment Standards Act (2000) allows for a Family Medical Leave, a Critically Ill
Child Leave and a Family Caregiver Leave.

The Family Medical Leave entitles employees to an eight week unpaid, job-protected
leave to provide care or support to a family member who has a significant risk of
death within a 26 week period. The employee must take the leave in one week
increments and provide a medical certificate.
 The Critically Ill Child Leave allows for up to a 37-week unpaid, job-protected leave
to employees who need to provide care or support to a child under the age of 18
whose life is at risk from an illness or injury. To qualify, the caregiver must have been
employed for at least six consecutive months, and a qualified health practitioner
must issue a certificate indicating the child is critically ill as a result of illness or injury
(and not a chronic condition) and requires the care or support of a parent or
guardian.

The Family Caregiver Leave, added in October 2014, entitles employees to eight
weeks unpaid, job-protected leave within a 52-week period to provide care or
12
support to certain family members for whom a qualified health practitioner has
issued a certificate confirming a serious medical condition.
Respite and Health Supports
The CCAC Client Services Policy Manual identifies respite services as a key support for
caregivers. The Ministry of Health and Long Term Care, via CCACs, funds two types of
respite services—in-home or short stay in long-term care homes—if a care recipient is
eligible for CCAC services. Caregivers may request 60 days at a time to a maximum of 90
days of short respite in a long-term care home as long as they pay a daily fee. If the care
recipient is not eligible for CCAC services, respite services can be arranged through
private providers. The Ministry of Community and Social Services and the Ministry of
Children and Youth Services fund an online network of respite service providers to make
it easier for caregivers to connect with them.
Quebec
Recognition and Definition
Quebec does not have formal legislation to recognize the contribution of family
caregivers. The Quebec home care policy, Chez Soi: Le Premier Choix, is based on the
recognition that family caregivers provide the majority of care to a patient. The policy
recognizes the caregiver as a care provider, an individual client and a partner, and its
stated objective is to provide support to caregivers so they are able to maintain their
usual relationship with the home care clients.
Employment and Financial Supports
The Quebec Act Respecting Labour Standards entitles caregivers to an unpaid leave of up
to 12 weeks over a 12-month period to care for a recipient who has a serious illness or
was in a serious accident. The care recipient must be the child, parent, or grandparent of
the caregiver or the caregiver’s spouse. The Act extends this leave to a maximum of 104
weeks if the employee has a minor child with a serious and potentially mortal illness
confirmed by a physician’s certificate.
13
Quebec offers a refundable Tax Credit for Caregivers if they live with an eligible spouse
or relative who is unable to live alone. Caregivers are eligible for the tax credit if: (i) their
spouse is 70 years or older and has a severe impairment of mental and health functions
that renders them unable to live alone, (ii) any relative with whom they are living has a
prolonged impairment of their mental or physical functions, (ii) no one else is claiming a
credit for the same recipient, and (iv) they are able to produce documented proof from
a physician of their dependent’s health status. Caregivers can claim the amount for any
number of relatives up to the specified amount (for the 2014 tax year, this amount was
$1,142).
The province also offers a refundable Tax Credit for Respite of Caregivers. Caregivers
can claim the credit if they paid to obtain specialized respite services for the care of a
person with a significant disability. The credit covers 30 percent of the cost of respite
services (for the 2014 tax year, this amount was $1,560 per year).
Respite and Health Supports:
In 2009, the Minister of Seniors introduced An Act to Establish a Caregiver Fund
dedicated to improving and providing respite, education and health services to
caregivers. L’Appui pour les proches-aidants provides local-based services for
caregivers of seniors. L’Appui, formed in 2009 through the caregiver fund, is divided into
regional branches with a mandate to provide training to caregivers, as well as
information about respite and psychosocial supports.
The Centre de sante et de services sociaux Cavendish in downtown Montreal runs a
Caregiver Support Centre that offers direct and flexible respite and other supports to
caregivers in the region. The Drop-in Program offers short-term respite to caregivers
(one to four hour periods) where care recipients can engage in group activities
facilitated by trained students or volunteers. The Centre also provides a Short-Term
Counselling Program for caregivers of six to 10 weeks. The program operates under the
supervision of a social worker and is designed to equip caregivers with coping
mechanisms and stress management techniques as well as information on available
respite and other support programs.
14
New Brunswick
Recognition and Definition
There is no provincial legislation to recognize the contribution of family caregivers. The
Home Support Services Standards recognize informal caregivers as members of the
“informal support system including family, friends or neighbours who provide care and
supervision to a client.”
Employment and Financial Supports:
In 2003, New Brunswick added the Compassionate Care Leave to its Employment
Standards Act (1982). The leave entitles employees to an eight-week unpaid, jobprotected leave to provide care or support to a person, with whom the employee has a
close family relationship, who has a significant risk of death within a 26 week period. The
employee must take the leave in one week increments and provide a medical certificate
that their family member has a significant medical condition and is facing death within
26 weeks.
Respite and Health Supports:
In 2011, the provincial government released the Caregivers Guide: Practical information
for caregivers of older adults, presenting information to “unpaid caregivers helping and
supporting seniors”. The guide is intended to increase support to families, friends and
volunteers to help them care for their seniors, with one chapter focused on the needs of
the caregiver.
Nova Scotia
Recognition and Definition:
Nova Scotia does not have formal legislation to recognize the role of family caregivers.
The Caregiver Benefit Program Policy, under the Department of Health and Wellness,
defines a caregiver as an, “individual who is providing unpaid assistance with ADLs
15
(activities of daily living) and IADLS (instrumental activities of daily living) to a family
member or friend.”
Employment and Financial Supports
The Nova Scotia Labour Standards Code (1989) entitles employees to an eight week
unpaid Compassionate Care Leave if they have been employed for at least three months
before requesting an unpaid leave to take care of a family member or relative who is
facing a significant risk of death within 26 weeks.
In 2009, Nova Scotia introduced the Caregiver Benefit Program, the only caregiver
benefit program in Canada. Both the caregiver and care recipient must meet eligibility
criteria and pass an assessment by the Nova Scotia Home Care program. To qualify for
the benefit, the care recipient must be 19 years or older, have been assessed for having
an impairment or disability requiring significant care, and have a net annual income of
$22,003 or less if single or a total household income of $37,004 or less if married. The
caregiver must be 19 years or older, be in an ongoing care relationship where they
provide 20 or more hours a week of assistance or care, and not be receiving other
compensation for the care. In 2012, the government raised the low-income threshold
and made 100 more Nova Scotian caregivers eligible for the benefit. During that year,
1,200 caregivers were receiving the $400 monthly benefit. The 2015-2016 Budget
allocated $1.8 million to fund a further expansion to the Caregiver Benefit Program.
Respite and Health Supports
The Department of Health and Wellness’ Home Care Policy manages respite and other
supports for caregivers. The policy provides access to respite beds in long-term care
facilities to the family member of a caregiver who requires emergency or scheduled care
relief; caregivers are charged a standard daily fee and the policy limits the service to 60
days in a given year.
Prince Edward Island
Recognition and Definition
16
Prince Edward Island does not have formal legislation to recognize the role of family
caregivers.
Employment and Financial Supports:
The Prince Edward Island Employment Standards Act (1988) allows for Compassionate
Care Leave, which is unpaid, job-protected leave for caregivers for a maximum of eight
weeks to provide care or support to a family member or relative facing a significant risk
of death within 26 weeks.
Respite and Health Supports
Health PEI provides various home support, adult day and long-term care programs to
patients and their family caregivers. The programs and services complement informal
care and are not specifically directed to support the health and wellbeing of caregivers.
Newfoundland and Labrador
Recognition and Definition
Newfoundland and Labrador does not have formal legislation to recognize the role of
family caregivers. At the policy level, the 2007 Healthy Aging Strategy acknowledged
caregivers and invested in support programming.
Employment and Financial Support
In 2004, the province incorporated the Compassionate Care Leave into its Newfoundland
Labour Standards Act (1990). Employees are entitled up to eight weeks of unpaid leave
to provide care or support to a family member if they have been employed for at least
30 days.
In 2014, the government introduced a Paid Family Care Giving Option to clients of the
Long-Term Care and Community/Home Support program. The program provided
subsidies to clients looking for an alternative self-managed option. To qualify, the client
17
must need personal and behavior supports at a maximum of four hours a day for
homemaking and one hour a day for meal preparation. Clients must pass a clinical and
financial assessment with quarterly in-person visits to monitor outcomes.
Respite and Health Supports:
The Long-Term Care and Community Support Services branch of the Department of
Health provides a Home Support program and can subsidize family caregivers for
services after completing a financial assessment. The government has funded the
Caregivers Out of Isolation program to create and provide a network of support
specifically for family caregivers.
Yukon
The territorial government does not have formal legislation to recognize the role of
family caregivers. The Continuing Care program is the primary provider of supports to
caregivers, providing residential care programs and respite services throughout the
community. Respite is available for up to four weeks in residential care facilities.
Northwest Territories
The territorial government does not have formal legislation to recognize the role of
family caregivers. The Ministry of Health and Social Services established the
“improvement of caregiver supports” as a key priority in its strategic framework, Our
Elders: Our Communities. In 2015, the Ministry published, The NWT Caregivers Guide, an
educational resource for caregivers on how to take on their caregiving role. The Home
and Community Care program provides short-term respite services and encourages the
use of a Community Counseling Program to relieve caregiver burden or stress.
Nunavut
The territorial government does not have formal legislation to recognize the role of
family caregivers. The Labour Standards Act allows up to eight weeks of unpaid leave
through Compassionate Care Leave with similar eligibility requirements to the federal
18
Employment Insurance Act. The Home and Community Care program aims to allow
seniors and other care recipients to maintain independence in their homes. The
Department of Health maintains a ”traditional” approach to health care by involving
families in the patient health care experience and supporting the family member during
difficult times.
INTERNATIONAL
United States
Recognition and Definition
In 2014, Oklahoma became the first state to enact the Caregiver Advise, Record, Enable
(CARE) Act. The legislation requires hospitals and rehabilitation facilities to: (i) allow
patients or their guardians to designate a caregiver when the patient is admitted or
discharged from treatment, (ii) inform the designated lay caregiver when a patient is
being discharged, and (iii) consult with the caregiver to describe the patient’s aftercare
requirements. Since Oklahoma enacted the law, 11 more states have passed or will pass
similar legislation by January 2016. The legislation recognizes the caregiver as part of a
patient’s care team.
Employment and Financial Supports
The Family and Medical Leave Act (FMLA) allows eligible employees to 12 weeks of jobprotected leave in order “to care for a spouse, child, or parent who has a serious health
condition” or for maternity and child-caring purposes. The eligibility requirements
include that the employer must be covered by the Act—most private employers with 50
or more employees are covered—and that the employee must have worked for the
employer for 12 months and accumulated a total of 1250 hours in those months.
Twelve states have family and medical leave act provisions with expanded eligibility
through employers. No states, however, provide job-protected leave for employees
wishing to provide care for family members besides a child, spouse, parent or parent-inlaw. Three states—California, Rhode Island and New Jersey—have enacted legislation
for a Paid Family Leave that grants compensation disability insurance to family members
19
if they suffer from a wage loss for taking time off work to care for an ill family member
(or newborn or adopted child). California, the first state to enact the law, allows family
members to receive six weeks of benefits over a 12-month period.
Respite and Health Supports
In 2000, the Older Americans Act of 1965 was amended to include a National Family
Caregiver Support Program. The program provides grants to states to fund support
services for family caregivers. Grantee states are funded for implementing innovative
approaches to sustain the efforts of family caregivers of older Americans and for
activities that involve program evaluation, training, technical assistance and research. In
2006, the program extended provisions to family members who are caregivers of those
with Alzheimer’s disease and related disorders, grandparents over age 55 providing care
to children under 18, and adults with disabilities between the ages of 18 to 59. In 2010,
700,000 caregivers received support through the program - the first explicit recognition
of the efforts of family caregivers by Congress.
The Administration for Community Living (ACL) and the Administration on Aging (AOA)
fund the State Lifespan Respite Program under the Public Health Service Act. The program
is operated by a designated government lead agency working in collaboration with a
state respite coalition and an Aging and Disability Resource Center. The program
coordinates community-based respite for caregivers to individuals of all ages. Since the
program’s inception in 2009, 32 states have received initial three-year grants and
integrative, sustainability grants. The ACL and the AOA require grantees to develop
performance measurements and indicators of their activities.
In 2011, the National Alzheimer’s Project Act was signed into law requiring the
Department of Health and Human Services to create and implement a national plan to
address the escalating Alzheimer’s disease crisis in the US. The National Plan 2015
contains a recommendation to “enable family caregivers to continue to provide care
while maintaining their own health and well-being.” An advisory council coordinates a
number of federal agencies and organizations to implement, research, and plan services
to patients of Alzheimer’s and their family members.
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The ACL, AOA and the Centers for Medicare and Medicaid Services (CMS) created the
Aging and Disability Resource Center Program (ADRC), commonly referred to as the “No
Wrong Doors System.” The system “serves as the single point of entry into long-term
supports and services” for older adults, people with disabilities and their caregivers. The
ADRC is designed to complement long-term care systems and to allow easy navigation
and information awareness for patients and caregivers. The centres created under the
program are networks of established partnerships between stakeholder groups that
streamline information through information management systems.
Since 1991, the Administration on Aging has funded the Eldercare Locator to assist older
Americans and their family caregivers to access information about services and supports
that are available to them. Eldercare users can operate on the Locator through email, the
website or the National Call Centre, which has trained information specialists who can
connect users with the appropriate resource, based given their needs, location and the
specific issue. The data collected from the Eldercare Locator provides valuable
information about caregiver requirements in the U.S.
United Kingdom - England
Recognition and Definition
England’s Care Act 2014 received Royal Assent in May 2014 and is to be fully
implemented by April 2016. The Act requires local health authorities to integrate
caregivers into health services provision and support their well-being, and to provide
information and advice relating to adult care and support. In response, a number of
local health authorities have set up e-market systems to allow adult social care users to
search for, and purchase, care services. The Care Act 2014 obligates health authorities
to conduct a “carer’s assessment” when it appears that a caregiver may have needs,
regardless of their financial means or level of the support they may require. The Act
replaces the Fair Access to Care Services and establishes one national eligibility
threshold (previously there were four thresholds). The Act applies to all recipients of
adult social care in England and is especially significant for integrating caregivers into
health authority requirements.
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Employment and Financial Supports
The Employment Act 2002 (c.22) allows all employees within the UK to request flexible
working time after they have worked for their employer for 26 weeks. Flexible working
provisions were originally mandated in the Work and Families Act 2006 for parents of
children 18 or over with a disability or children six and under. The incorporation of
flexible working provisions into the Employment Act gives all UK caregivers a statutory
and legal right to balance work and care.
The Carer’s Allowance is the main benefit program available to UK residents. Caregivers
qualify for the allowance if they are 16 years or older, spend 35 hours a week in a
caregiving role, are not enrolled in full-time education or employment, and earn no
more than £110 (approximately $220) weekly. The care recipient must also have
qualified for disability or illness benefits. The allowance is a taxable, means-tested
benefit that may affect caregivers’ rights to receive other state benefits. In 2013, Carers
UK estimated that over 365,000 eligible caregivers in the UK were not claiming the
benefit. Caregivers may also be eligible for the Carer’s Credit if they are providing care
or support for at least 20 hours a week and are below State Pension age. The allowance
amounts to £62 (approximately $125) weekly.
Respite and Health Supports
The National Health Service (NHS) England operates a Carers Direct helpline for
caregivers who have questions about their caregiving role. The helpline provides
information on carer’s assessments, financial supports and time off requests, and can
connect caregivers with local health authorities or specialist services. After a carer’s
assessment, as per the Care Act, caregivers work with providers to develop a support
plan. All caregivers are entitled to a support plan that outlines goals for their mental and
physical health and their eligibility for local respite and support services. However, the
availability of respite and support services is dependent on availability of local resources.
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United Kingdom - Scotland
Recognition and Definition
In March 2015, the Carers Bill 2015 was introduced in the Scottish Parliament. The Bill
recognizes the contribution of caregivers to society, and increases their rights. It
contains provisions for local authorities to support caregivers based on consultations
and recommendations from the Carers Parliaments, which were held in 2012 and 2013.
The bill requires local authorities to: (i) to create an adult carer support plan (ACSP) or a
young carer’s statement, (ii) establish local eligibility criteria, which must be published
and reviewed every three years, to provide support for caregivers, (iii) create a carer
strategy that assesses demand and supply of caregiver services within the area and
presents a plan to address needs, (iv) establish and/or maintain an information and
advice service for caregivers in the area, and (v) involve caregivers in the planning of
services delivery to both caregivers and care recipients.
Employment and Financial Supports
In 2014, the Scottish government funded Carers Scotland to develop the Carers Positive
program for businesses that have noteworthy policies and practices to support
caregivers. Businesses and organizations submit a self assessment of their employment
practices in order to be recognized as Carer Positive and eligible for sources of funding.
Exemplary employers under the program have a system to identify caregivers, recognize
caregivers in their human resource policies, provide workplace support, raise awareness
about caregiving and encourage peer support. The initiative aims to foster an
employment culture that supports the contributions of caregivers with the expectation
that “carer-friendly employment policies” can reduce stress levels, improve productivity,
and reduce absences.
Respite and Health Supports
23
The Scottish government funds the Short Breaks Fund, managed by Shared Care of
Scotland on behalf of the National Carer Organizations4. Shared Care funds third sector
(non-governmental) organizations to develop or improve respite for caregivers who
have a substantive caring role, who are not likely to access existing support, or whose
needs are not met by current provisions. The government provided almost £13 million
($26-million) to the Fund between 2010 and 2015.
Australia
Recognition and Definition
The Caregiver Recognition Act 2010 was the first step in the government’s framework for
national caregiver recognition and formed the basis of the National Carer Strategy
(2011). The Strategy defined ten principles for the rights of caregivers including
recognition for contribution, support for health and wellbeing, and inclusion into care
provision relationships. In 2012, Victoria became the last state to pass legislation to
recognize the role of caregivers.
Employment and Financial Supports
The Department of Human Services provides a Carers Payment to eligible caregivers of
someone with a disability, or a frail elderly person, for a minimum amount of time
(usually six months). The care recipient must meet eligibility criteria in order for the
caregiver to receive the payment, which is asset and income tested. In addition
caregivers can receive a Carer’s Allowance, which isn’t income or asset-tested, and an
annual Carers Supplement.
Respite and Health Supports
There are a number of federally funded respite and caregiver support programs. The
National Respite for Carers Program (NRCP) provides various types of community access
or consumer directed respite care for caregivers, including in-home or centre-based day
4
The National Carer Organizations of Scotland are: Carers Scotland, the Coalition of Carers in Scotland, Minority
Ethnic Carers of Older People Project (MECOPP), Carers Trust Scotland, the Scottish Young Carers Services Alliance,
Crossroads Caring Scotland and Shared Care Scotland.
24
respite, or overnight and longer respite. The government also funds the National Carer
Counselling Program to assist caregivers with short-term emotional and psychological
counselling services. Caregiver organizations are subsidized to provide counselling and
support services to caregivers at an affordable, income-dependent cost. In 2015, the
government announced $33.7 million (Australian) over four years to create the
Integrated Plan for Carer Support Services, with one-third of the funding is to be
devoted to the creation of an online website and call centre to act as a central gateway
for caregivers in Australia.
New Zealand
Recognition and Definition
New Zealand does not have legislation to formally recognize caregivers. In 2014, the
Minister for Senior Citizens launched the New Zealand Carers’ Strategy Action Plan 2014
to 2018. The Action Plan was developed as a collaborative effort, bringing together
government agencies, Carers New Zealand, caregivers throughout New Zealand via
online and postal questionnaires, and focus groups with caregivers and caregiver
organizations. The Action Plan provides a framework to improve the lives of caregivers,
protect their well being, improve their pathways to employment, and provide better
access to information on available supports.
Employment and Financial Supports
Work and Income New Zealand pays a Supported Living Payment to people who have,
or are caring for someone with a disability, health condition or injury. To receive the
payment, the caregiver must be providing care equivalent to the level of care available
in residential or inpatient hospital care, and the care recipient cannot be a husband,
wife, or partner. The Employment Relations Act 2000 entitles employees to make a
request for flexible working time at any time during their employment to vary their place
of work, days worked. and hours of the day worked. Since 2007, the flexible working
provision has evolved to make the request process quicker and more open to
employees who do not have tenure.
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Appendix 1: Summary of legislation, policies and supports for caregivers by jurisdiction
The following table summarizes content presented in this report with the intention of providing a quick reference to compare the
jurisdictions.
Jurisdiction
Recognition and Definition
Employment and Financial Supports
Respite and Health Supports
Canada
(federal)
There is no federal legislation to
recognize the role of caregivers.
Compassionate Care Benefits through Employment Insurance for six
weeks; by 2016, this will be extended to six months.
Respite and other supports fall under provincial
and territorial jurisdiction.
Insurance for Parents of Critically Ill Children - benefits for up to 35
weeks within a 52 week period to care for a child with life
threatening injury.
British
Columbia
Alberta
Saskatchewan
Manitoba
There is no provincial legislation to
recognize the role of caregivers. The
Home and Community Care Policy
recognizes the role of the caregiver,
along with the patient, as part of the care
team.
There is no provincial legislation to
recognize the role of caregivers. The
provincial Home Care policy recognizes
the contribution of family caregivers.
There is no provincial legislation to
recognize the caregiving role. The Home
Care policy recognizes the contribution
of caregivers as a significant part of
home care client case management.
Manitoba is the only province to formally
recognize the contributions of caregivers
in provincial legislation. The Caregiver
Two federal non-refundable tax credits: Family Caregiver Amount
and the Amount for Infirm Dependents age 18 or older.
The Family Responsibility Leave entitles employees up to five days of
unpaid, job-protected leave. The Compassionate Care Leave
provides eligible employees up to eight weeks unpaid, jobprotected leave.
Ministry of Health subsidizes home and
community care services—e.g., Adult Day
Services, Caregiver Relief, Short-Term Residential
Care Services.
Ministry of Children and Family Development
supports the At Home Program.
Last province to incorporate Compassionate Care Leave of 8 weeks
into Employment Standards Act; the definition of ‘family’ caregiver
is broad.
Saskatchewan Employment Act entitles employees to
Compassionate Care Leave for up to eight weeks.
The Home Care policy allows for family caregivers to be
compensated financially for their role under “exceptional”
circumstances.
The Employment Standards Code entitles eligible employees to
Compassionate Care Leave (eight weeks). The Critically Ill Child
Leave entitles employees to up to 37 weeks unpaid leave.
Ministry of Health funds the Alzheimer Society of
British Columbia’s First Link program.
Respite, training and information available for
home and community care client family
members.
Alberta Health Service funded a ‘Family
Caregiver Centre’ in the Calgary Health Trust.
The Home Care Policy Manual includes respite
and supports to be provided by Continuing Care
Assistants or Home Care Aides.
Respite and other supports are available through
the Manitoba Home Care Program.
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Jurisdiction
Recognition and Definition
Recognition Act (2011) increases
awareness of caregivers, recognizes their
valuable contribution to society, and
establishes a framework for caregiver
supports.
Ontario
Quebec
New
Brunswick
Nova Scotia
There is no provincial legislation to
recognize the role of caregivers. The
Community Care Access Centre’s Client
Services Policy Manual specifies caregiver
support services as a key area of service
delivery.
There is no formal provincial legislation
to recognize the role of caregivers. The
provincial home care policy—Chez Soi:
Le Premier Choix—recognizes the
caregiver as a care provider, individual
client, and partner.
There is no provincial legislation to
recognize the role of caregivers. Home
Support Services Standards recognize
“informal” caregivers as members of a
client’s care team.
There is no provincial legislation
recognizing the role of caregivers.
Caregivers are recognized through the
Caregiver Benefit Program Policy.
Prince Edward
Island
There is no provincial legislation to
recognize the role of caregivers.
Newfoundland
& Labrador
There is no provincial legislation to
recognize the role of caregivers.
Employment and Financial Supports
Respite and Health Supports
The Primary Caregiver Tax Credit, introduced in 2008, is a
refundable tax credit for caregivers (it is not income-tested).
The province funds the Alzheimer Society of
Manitoba’s First Links program annually.
Self and Family Managed Care program allows for family members
to receive funds for providing assessed services to home care clients
for circumstances such as locational, cultural or linguistic barriers.
The Employment Standards Act allows caregivers three possible
leaves:

Family Medical Leave—eight week unpaid, job-protected leave

Critically Ill Child Leave—37 weeks unpaid, job-protected leave

Family Caregiver Leave—eight week unpaid, job-protected
leave
The Ministry of Health funds in-home and short
stays in long-term care homes for care recipients
eligible for CCAC services.
Labour Standards Act entitles family members to a 12 week leave
over a 12 month period to provide care to a family member. The
Act extends this leave to a maximum 104 weeks if the employee has
a minor child with a potentially mortal illness.
The province also has a refundable Tax Credit for Caregivers, and a
refundable Tax Credit for Respite of Caregivers.
Employment Standards Act has a Compassionate Care Leave of
eight weeks, unpaid leave for family caregivers.
Labour Standards Code entitles eligible employees to up to eight
weeks of unpaid leave through the Compassionate Care Leave.
Caregiver Benefit Program—established in 2009 as the only
caregiver benefit program in Canada—entitles eligible caregivers to
a monthly benefit of $400.
Employment Standards Act entitles eligible employees to up to eight
weeks of Compassionate Care Leave - unpaid leave to care for a
family member facing significant risk of death within 26 weeks.
Labour Standards Act entitles employees to eight weeks of
Compassionate Care Leave to provide care and support to a family
member if they have been employed for at least 30 days.
Ministries of Community and Social Services, and
Children and Youth Services fund a network of
respite services.
“Caregiver Fund” established in 2009 to provide
respite, education and health services to
caregivers. L’Appui, formed through the
Caregiver Fund, provides local based services for
caregivers of seniors
Cavendish Health and Social Services Centre runs
a ‘Caregiver Support Centre’.
In 2011, the provincial government released the
Caregivers Guide: Practical information for
caregivers of older adults.
Department of Health and Wellness’ Home Care
Policy provides caregivers access to respite and
other supports.
Health PEI provides various home support, adult
day and long-term care programs to patients
and their family caregivers.
The Caregivers Out of Isolation Program
provides a network of support for caregivers.
The government subsidizes a Paid Family Care Giving Option, an
27
Jurisdiction
Yukon
Northwest
Territories
Nunavut
Recognition and Definition
There is no territorial legislation to
recognize the role of caregivers.
There is no territorial legislation to
recognize the role of caregivers. Ministry
of Health and Social Services established
the improvement of caregiver supports
as a priority.
There is no territorial legislation to
recognize the role of caregivers.
Employment and Financial Supports
Respite and Health Supports
alternative self-managed, agency-based option for Long-Term Care
and Community Support client care.
Labour Standards allows up to eight weeks of unpaid leave through
Compassionate Care Leave.
Labour Standards allows up to eight weeks of unpaid leave through
Compassionate Care Leave.
Continuing Care program is the primary provider
of supports to caregivers, including respite.
Ministry of Health and Social Services published
the NWT Caregivers Guide in 2015.
Labour Standards Act allows up to eight weeks of unpaid leave
through Compassionate Care Leave with similar eligibility
requirements to the federal Employment Insurance Act.
Department of Health maintains a “traditional”
approach to health care by involving families in
the patient health care experience and
supporting family members during difficult
times.
Oklahoma enacted the Caregiver Advise,
Record, Enable (CARE) Act in 2014. The
legislation requires that caregivers be
informed and consulted. 11 more states
have or will pass similar legislation by
January 2016.
There are no states that provide job-protected leave for employees
wishing to provide care for family members besides a child, spouse,
parent or parent-in-law. Family and Medical Leave Act provides 12
weeks of job-protected leave to employees to care for a spouse,
child or parent who has a serious health condition, or for maternity
and child-caring purposes.
National Family Caregiver Support Program
provides grants to states and territories to
provide supports to caregivers including:
screening, respite, counselling, chore services,
medical equipment, etc.
In 2000, the National Family Caregiver
Support Program amendment to the
Older Americans Act of 1965 was the first
explicit recognition of the efforts of
family caregiver by Congress.
Care Act 2014 requires local health
authorities to integrate caregivers into
health service provision, and requires
health authorities to conduct a ‘carer’s
assessment’.
Paid Family Leave has been enacted in only three states: California,
Rhode Island, New Jersey
INTERNATIONAL JURISDICTIONS:
United States
England
Scotland
Carers Bill 2015 introduced in the
Scottish Parliament, requiring local
authorities to create carer support plans,
establish local eligibility criteria, create a
carer strategy, and involve caregivers in
planning.
Work and Families Act allows employees to request flexible working
time to care for children under age six or over 18 with a disability.
Expanded to all UK employees as of 2012.
Carer’s Allowance is the main benefit program available to all
caregivers in the UK; the benefit is a taxable, means-tested benefit
amounting to approximately $125 weekly.
In 2014, the government funded the ‘Carers Positive’ kitemark to
recognize employers with noteworthy, care-friendly workplace
policies.
Eldercare Locator is the longest-running, largest
consumer-direct program that assists caregivers,
elderly and professionals to identify helpful
resources; the website and call centre format
makes it highly accessible.
Carers Direct Hotline, funded by the NHS,
provides information of carer’s assessments,
financial supports, time off requests and
connections to local services.
The government funds the National Carer
Organizations to run the Short Breaks Fund to
expand access to respite and other supports for
caregivers.
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Jurisdiction
Recognition and Definition
Employment and Financial Supports
Respite and Health Supports
Australia
Caregiver Recognition Act 2010 and
National Carer Strategy 2011 formally
recognized the role and rights of
caregivers. By 2012, all states in Australia
had introduced similar parliamentary
legislation.
New Zealand Carers Strategy Action Plan
launched in 2014. There is no formal
legislation to recognize caregivers.
Department of Human Services provides an asset and incometested Carers Payment. As well, caregivers may be eligible for a
Carer’s Allowance (not means-tested) and/or an annual Carers
Supplement.
National Respite for Carers Program (NRCP) and
the National Carer Counselling Program are
federally funded caregiver programs.
New Zealand
Work and Income New Zealand, under exceptional circumstances,
provides a ‘Supported Living Payment’ to family caregivers.
Under the Employment Relations Act, employees are able to make a
request for flexible working time.
29