Care, caring, and caregiver are words used to describe those who take care of family members or friends out of love. These terms are also used by those who are paid to help and support others. This is confusing on a number of fronts. One: there is a big difference between being paid to provide care versus not expecting and not receiving financial compensation. Two: the policy discussions and funding decisions tend to focus on professional and paid care provided by non profits, governments or institutions as if they were the only ones. This paid sector receives the bulk of the financial resources allocated by governments. In this regard, natural care is playing teeter totter with an elephant. That the dimensions, requirements and scale of natural care is invisible is a serious public policy issue. We have relegated it as a private matter. In fact, it defines us as a species, as a country, as a society, as an individual. Providers of natural care need resources to support themselves and the people they are caring for. It is a matter of decency, natural justice and our collective survival. This serious matter should be a high public policy priority. Al Etmanski delivered this presentation on December 7, 2011 along with a webinar you can access here: http://bit.ly/v6w0Bx Visit our SiG website for further resources: http://sigeneration.ca

1. Taking Care - It’s in our Nature
December 7th, 2011
Al Etmanski - Partner, Social Innovation Generation; Co-Founder PLAN;
Chair, BC Advisory Council Social Entrepreneurship

2. Tyze
creates
private,
secure,
online
networks
that
coordinate
care
and
contribute
to
improved
outcomes
and
cost
efficiencies.

3. Taking Care Is
… a fact of everyday life, for everyone.
Either as family, friends, neighbours, co-workers, members of networks
or community we take care of our children; people with chronic illness,
disability or mental illness; people with health challenges;
people down on their luck; people in crisis or the victim of a catastrophe;
and people who are ageing and infirm and their caregivers.
Natural freely given care is the backbone of our society.
from Taking Care - BC’s Advisory Council on Social Entrepreneurship
http://socialinnovationbc.ca/about/
-3-

4. Taking Care Is
…heart work, accompanied by joy, grace, and tenderness.
It can also be messy, unyielding, unromantic and
decidedly unglamorous. It is given to people we love and
care about, who are or have become dependent on us for
many basic needs. This includes caring for our babies,
our loved ones who are elderly, who have chronic illness,
mental illness or disabilities, and for each other.
-4-

5. 80/20 Proposition
• The four million family caregivers of ailing parents and
relatives with severe disabilities provide more than 80 per
cent of care in this country. Most are women - and we
face unique pressures. (Sherri Torjman)
• Professional service provision is also dependent on natural
freely given care. Most (80%) who receive paid in home care
still rely on friends and family for most of their care
and sense of belonging.
-5-

6. It’s in our Nature
Unpaid family caregiving has become a key component of Canada’s
publicly-funded health and social care system.
As our population continues to age, more and more British Columbians will
find themselves caring for parents, grandparents and other older adults.
Many caregivers will join the ‘sandwich generation’, who provide care
simultaneously for both young children and parents.
Home care could not exist in Canada without the support
of informal networks and caregivers.
BC Law Institute/Canadian Centre for Elder Law
-6-

7. It’s in our Nature
• 2.7 Million (8% of Canada's population) provide care to their aging relatives
• Up to 90% of eldercare is delivered by families
• 500,000 Canadians care for an adult relative with mental illness
• 28% of Canadians provide health care assistance to a family member or friend
• in total there are 4 million family and friends providing care in Canada
• the majority of caregivers are women
• 70% of caregivers are employed
• care provided by friends to friends ranks second only to people caring for their mothers
-7-

8. It’s in our Nature
… a reasonably conservative estimate of the imputed
economic contribution of unpaid caregivers for Canada,
for 2009, would be $25-$26 billion.
» Marcus J. Hollander, Guiping Liu and Neena L.
Chappell
» www.longwoods.com/content/20660
-8-

9. Challenges
• Natural care is under stress - loss of wages; job insecurity;
limited respite; inflexible program criteria; limited recognition of
extraordinary costs; few preventive resources; institutions and
society that is not care friendly
• Budgets for institutional and professional caregiving are under
stress. Government resources declining at a time of increased
service demand
• Social isolation underpins homelessness, poverty, ageing,
mental illness, disability, family caregiving, unemployment
-9-

10. Stresses
There are more First Nations children in foster care today
than were placed in Residential Schools at their height.
Cindy Blackstock - First Nations Caring Society
- 10 -

11. Stresses
More than one in four Canadian employees
who are caregivers experience high levels of
financial, physical and/or emotional stress that
can affect their health, their effectiveness as a
caregiver, and their labour force participation.
Many caregivers quit their jobs, reduce their
hours, experience high absenteeism and forfeit
career ambitions and aspirations. Their income
drops, their health suffers and their stress
levels rise.
Vanier Institute of the Family
- 11 -

12. Stresses
Caregivers often pay for basics for care receivers, many
of whom live in poverty. Caregivers typically pay for
disability supports not covered by medicare or private
insurance.
Sherri Torjman
- 12 -

13. Four Thoughts on Next Steps
1. Thinking and Acting like a Network
2. Shifting Resources
3. Coming Together
4. Supporting Passionate Amateurs
- 13 -

14. Premise
At a time when our formal, paid systems of
health and social care are under stress,
let’s make sure the backbone of natural
care is strong,healthy and resilient.
Reform of health and social care systems and
institutions must also take into consideration those
who provide the bulk of care - families, friends,
co-workers, network members, neighbours, volunteers
- 14 -

15. 1. Thinking and Acting Like a Network
• New Mindset - from individual focus to network centric
approach to care
• Ethic of Care - an issue of justice, our survival and well
being
• Giving and receiving care defines us as citizens
- 15 -

16. Social Justice
Social factors have a powerful influence on human health and
longevity. Yet the social dimensions of health are often obscured in
public discussions due to the overwhelming focus in health policy on
medical care, individual-level risk factor research, and changing
individual behaviours. Likewise, in philosophical approaches to health and
social justice, the debates have largely focused on rationing problems in
health care and on personal responsibility. However, a range of events over
the past two decades such as the study of modern famines, the global
experience of HIV/AIDS, the international women’s health movement,
and the flourishing of social epidemiological research have drawn
attention to the robust relationship between health and broad social
arrangements. Sridhar Venkatapuram - Health Justice
- 16 -

17. From Individual to Network Centric
The
most
appropriate
care
system
for
an
aging
society
is
one
that
supports
both
caregivers
and
older
adults
in
a
comprehensive
long-­‐term
home-­‐care
system.
Such
a
system
can
be
cost-­‐effec;ve
if
established
so
that
it
subs;tutes
for
more
expensive
forms
of
other
services
when
care
needs
jus;fy
it.
Neena
Chappell
Canada
Research
Chair
in
Social
Gerontology
- 17 -

18. From Individual to Network Centric
Virtually all home care clients also rely on a spouse, adult
child, friend or neighbour to provide practical assistance
and emotional support. According to Nancy White at
Canadian Institute for Health Information, having a
friend or family member provide support in addition to
paid home care, makes it possible for people to stay in
their own homes.
- 18 -

19. Acknowledging Dependency
..the support and assistance one individual requires of
another where the one in need of care is ' inevitably
dependent', …because they are young, too ill or
impaired, or too frail to manage daily self-maintenance
alone. Eva Kittay
- 19 -

20. The Beauty of Dependency
The vulnerable people whom your committee is called to reflect about caring
for, are often in a precarious state, mentally or physically or both. They are
often in anguish. The old, those living with illness and perhaps near death,
those in depression and with a sense of despair, those living with
disabilities; these are all people living in a most fragile state. The danger in
our culture of productivity and achievement is that we easily dismiss and
ignore as unproductive the gifts and the beauty of our most vulnerable
members, and we do so at our own peril, dehumanizing ourselves.
Jean Vanier - Letter to Parliamentary Committee on Palliative Care
- 20 -

21. Caring Equals Citizenship
Citizenship is a way of making concrete our ethical
commitment to care and to realize our obligations to aid our
‘fellow travelers.’ Mark Kingwell (The World We Want)
- 21 -

22. Caring Equals Citizenship
Illness is the night side of life, a more onerous citizenship.
Everyone who is born holds dual citizenship, in the kingdom of
the well and in the kingdom of the sick. Although we all prefer
to use the good passport, sooner or later each of us is obliged,
at least for a spell, to identify ourselves as citizens of that other
place. Susan Sontag
- 22 -

23. 2. Shifting Resources
…it's not good enough just to say: " Vital social goals
should be put on hold because there's no money.”
Shift funds from institutions to home care - in recognition
of family caregivers who are the backbone of Canada's
health care system.
Sherri Torjman, Caledon
- 23 -

24. Key Policy Question
What would it take to make it easier for people to take
care of friends and families?
- 24 -

25. Shifting Resources
Mantra #4. You can’t deliver 21st century care with a 1950s system.
Our health system was designed for the delivery of episodic acute care by physicians,
principally in hospitals. The reality today is that most patients have multiple chronic conditions
and they can be treated in the community.
We need to fundamentally re-shape the system to reflect their needs. That means an emphasis
on primary care, on team-based care delivery and creating a continuum of care.
Our ultimate goal: A good life and a good death.
André Picard
- 25 -

26. Shifting Resources
Home
Care
is
at
least
40%
cheaper
to
provide
than
insEtuEonal
care.
Policies
that
support
the
needs
of
caregivers
are
important
for
several
reasons:
The
formal
care
system
could
never
replace
all
of
the
support
provided
informally;
many
caregivers
make
great
sacrifices
in
order
to
provide
the
care
that
they
do;
and
caregivers
express
a
desire
to
conEnue
in
this
role.
Without
assistance,
however,
caregivers'
own
health
can
deteriorate,
forcing
care
recipients
to
rely
on
the
formal
healthcare
system
at
a
much
greater
cost.
Neena
Chappell
Canada
Research
Chair
in
Social
Gerontology
- 26 -

27. Thank you and Take Care
Studies
show
people
heal
more
quickly,
get
sick
less
oOen,
and
use
health
and
human
services
more
efficiently
when
they
have
a
supporEve
social
network.
Tyze
Personal
Networks
- 27 -

28. 3. Supporting Passionate Amateurs
L’Arche; Representation Agreements; Roots of Empathy;
Santropol Roulant; Tyze; Hospice; PLAN; La Leche League;
MADD; RDSP; First Nations Caring Society; Slow Food
Movement; JUMP; Vibrant Communities; Canadian Caregivers
Association; Green St.;Ma Rue Vert; Taking It Global; Free The
Children; Operation Nez Rouge; Ability Foundation; Inclusion
Press; Judith Snow’s Laser Eagles Art Guild; Encyclopédie de
L’Agora…
Kathy Kastner Donna Thomson Kathy Bromley
- 28 -

29. 4. Coming Together
At the heart of social innovation is a focus on working
together. No one individual, network, organization,
company, department or sector can resolve our stubborn
social challenges on its own.
BC Advisory Council Social Innovation
We are bound together in a single garment of destiny.
Whatever affects one directly, affects all indirectly. I can
never be what I ought to be until you are what you ought
to be. This is the interrelated structure of reality.
Martin Luther King
- 29 -

30. Come Together
Since we share the same aspirations, ethics and challenges
isn’t it time we came together?
• First Nations, Métis, Innuit
• Early Childhood Educators
• Families
• Caregivers
• People with Disabilities
• Mental Health Advocates
• People with chronic illness
• Teachers, unions, governments, opponents, allies, you, me
- 30 -

31. Three Types of Innovation
One: Disruptive Innovation
Strengthen, support and scale local innovations in natural caring
and belonging
Two: Receptive Innovation
Increase receptive capacity of government, business and service
providers to support natural care
Three: Bridging Innovation
Create new intermediary (mediating) systems, technologies and
organizations that ensure formal institutions and service providers
can collaborate with natural care providers without
overpowering them
- 31 -

32. Tyze Personal Networks

33. Links
• www.ccc-ccan.ca Canadian Caregiver Coalition a highly effective coalition pushing for family
caregiver reforms.
• BC Law Institute's and Canadian Centre for Elder Law's Project on Family Caregiving:
http://www.bcli.org/projects/family-caregiving
• Deloitte's annual Canadian Health Care survey:
https://www.deloitte.com/view/en_CA/ca/pressroom/ca-pressreleases-en/press-release/
cdac709bf1325210VgnVCM100000ba42f00aRCRD.htm
• www.irpp.org - Institute for Research on Public Policy - see Neena Chappell’s study Population
Aging and the Evolving Care Needs of Older Canadians
• www.fncaringsociety.com First Nations Child and Family Caring Society
• http://www.caledoninst.org/ anything by Sherri Torjman
• http://www.vifamily.ca/node/918 Vanier Institute of the Family
• www.participle.net A multi-disciplinary design social enterprise creating public services of the
future starting with the individual and their community.
• www.tyze.com Tyze a web based tool to assist in the creation of caring social networks.
• www.appartenance-belonging.org/en/ Exploring all manifestations of belonging
- 33 -

34. Thank you and Take Care
The capacity to care is the thing which gives
life its deepest meaning and significance.
Pablo Casals
- 34 -