The Four Walls of My Freedom (22 page)

The way we care for each other is changing. Traditional government-funded “cradle to grave” care provision no longer exists in Canada or the UK. Able-bodied people are aging into disability, and those with disabilities are aging too. Everyone is living longer, but not necessarily better. Currently, almost one-third of all Canadian and American adults care for someone they love with a long-term health condition, disability or age-related needs. By 2061, over one-quarter of our population will be sixty-five or older.
1
Given the low fertility rates of baby boomers, it stands to reason that in the future, able and healthy seniors will form a significant portion of the caregiving community.

Making the future palatable for aging or infirm citizens and their caregivers will require humility, imagination and collaboration. Stakeholders agree that the need for wholesale change in the funding and organization of community care is urgent. The good news is that social change designers in the caregiving movement are intensely and creatively engaged in finding solutions that will “future-proof” our society.

Some of the most successful models of enabling effective community care have been those that lay the groundwork for families and friends to look after one another with carefully coordinated support from professional service providers. Tools such as Tyze Personal Networks that bridge family (informal) care with professional (formal) care are capturing the interest of elected officials here and abroad. Elder Power, the Maine-based care coordination tool described in chapter 5 is another example of how contemporary social innovators are borrowing from social media to help healthy older people leverage their skills and talents with the objective of caring for their less-able neighbours. Today, the conversation of caregiving change leaders is peppered with terms like “co-created solutions,” “social innovation,” “social change labs,” “deep-change scenario planning” and “solutions-based advocacy.”

For family caregivers and their vulnerable charges, the future is a work in progress. Dr. Bruce Chernof is chair of the U.S. Commission on Long-Term Care, and in his findings he identifies the tendency to approach long-term care through a medical lens as a barrier to positive change. He notes that people do not spend their lives in hospitals or doctors' offices, but rather with families and loved ones in their communities. Dr. Chernof thinks that solutions to our contemporary care dilemmas cannot be found in the construction of more nursing homes: he strongly believes that more community-oriented care delivery is the way forward. But he doesn't stop there. He envisions a day when family caregivers are fully functioning members of the care team whose services would be documented in patient records.
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Recognizing the caregiver role in the patient's chart would embed the critical role of family in the circle of care.

Al Etmanski and Vickie Cammack are caregiving change leaders in Canada whose innovative strategies are recognized internationally. They are the co-founders of PLAN (Planned Lifetime Advocacy Networks) and internationally renowned social change gurus. Etmanski identifies three key elements to transforming community care. He says solutions must be co-created across sectors and partners, be driven by solution-based advocacy (what
can
we do, rather than what
can't
be done), and that all models for change must include the full participation of friends, foes and strangers. Etmanski has read the tea leaves for caregiving in Canada. He echoes the thinking of Dr. Chernof and believes, “The reform of health and social care systems and institutions must place priority on supporting those who provide the bulk of care — families, friends, co-workers, network members, neighbours, and volunteers.”
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Caregiving is still considered by many to be “women's work.” But the support groups that Al Etmanski describes are almost entirely gender-balanced. In Canada, men constitute 46 percent of all caregivers and that statistic is likely to grow as men and women increasingly share the responsibility of family care.
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 It will be interesting to see how male caregivers will influence future trends in social policy.

Vickie Cammack, also the founder and CEO of Tyze Personal Networks, believes that the reluctance of the medical community to recognize the contributions of informal caregivers is the greatest barrier to positive change in social care. Her research into the positive health outcomes of network-centred care demonstrates that in order to realize a sustainable plan for the future, the modus operandi of the medical community will have to become flexible and collaborative. The family caregiver as a core health care delivery agent is at the heart of her collaborative care design.

Governments and the private sector have roles to play in incentivizing and supporting caregivers throughout the country, but they cannot do it alone. Idea incubators throughout the Western world are establishing co-operative, innovative funding arrangements across sectors. “Change labs” are the model for brainstorming how stakeholders can provide affordable care for those who need it. These labs convene creative thinkers who want to both design models that can be applied to various difficult social problems and to play a vital part in valuable social change. These strategic partnerships and funding models are conceptualized in the change lab and then tested in small community trials.

There is no single solution to our current and future caregiving challenges. Rather, innovators are looking at platforms for crowdsourcing ideas and for devising ways that government, business and the non-profit sector can work together to enable care in society. Crowdsourcing concept proposals, grand challenges and prizes for excellence in innovation are popular now with agents of social change. When A Place for Mom, a private U.S. senior living resource company, recently launched a Senior Care Innovation Scholarship, young economists and business scholars flocked to propose concepts for innovation. Social media offers a myriad of choices for the flow of problem solving and idea sharing amongst professionals and end users alike. Widespread public engagement with online caregiving sites results in a shift toward greater acceptance of giving and receiving care across society.

All of these social change-makers agree that a shared perception of abundance, as opposed to poverty in vulnerable communities, will lead to positive and sustainable development. John McKnight, co-director of the Asset-Based Community Development Institute has — for over thirty years — led the movement encouraging communities to combine resources in poverty-ridden neighbourhoods. McKnight is famous for knocking on the doors of homes and apartments to ask people: “What are your skills, talents and passions?” He collates the results of his interviews to create community asset maps. These treasure troves of neighbourhood resources can be mined by individuals who want to trade their skills, as well as by local governments seeking to leverage the talents of their constituents in the process of community development. McKnight's work has forged the architecture for new research by Sendhil Mullainathan and Eldar Shafir, authors of
Scarcity: Why Having Too Little Means So Much
, showing that both the reality and the mindset of poverty cause its victims to make poor personal decisions that serve to perpetuate scarcity, hopelessness and inaction; poverty itself keeps people poor. Their research shows that innovation and deep social change can only come when citizens problem solve from an assumption of abundance.

The trick to helping communities find their own answers to caring for their citizens is not in locating charismatic leaders, but in forming “leader-full” alliances of elected officials, bureaucrats, members of the medical community, caregivers and care receivers. Government resources should always cover those in need of acute care and the intensive nursing of long-term care patients. But the non-nursing care of an aging citizenry is a matter for all. John McKnight challenges us to think creatively about how to lead a good life, and to think beyond our own individual needs to create positive social change. Perhaps the looming urgency of sourcing assistance for a rapidly aging society will provoke us to co-create solutions involving all who wish to form a partnership of care. Our future wellbeing will depend on it.

© Natalie Wright

Donna Thomson
began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author and consultant. She is married to James Wright, the former High Commissioner for Canada in the UK. Their previous postings have been in London, Washington, DC, and Moscow. Jim and Donna have two children and live in Ottawa, Canada.

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