I just came back from the OACCAC‘s* annual conference – I was part of this illustrious panel:
- Dr. Tim Rutledge (CEO of North York General)
- Dr. Jonathan Kerr (Family physician and President of the Ontario Association of Family Physicians)
- Nadine Henningsen (President of the Canadian Home Care Association)
- Jennifer Johannesen (Patient and Caregiver Advocate)
- Moderator Jeffrey Simpson, National Affairs editor for the Globe & Mail
The session was titled “Balancing More and Less: The Future of Care” and we were there to represent our various interests: acute care, primary care, home care and patients and caregivers. (Guess which one I was?)
The conversation was lively and fascinating but of course each of us could only address our points at a very high level. I’d prepared some brief opening remarks in case I was called upon to Speak on Behalf of the People; I didn’t deliver this exactly but covered many of these points spontaneously.
You never know who’s going to read this as follow up – so thought I’d share my notes (below) and see if anyone wants to chime in?
* Ontario Association of Community Care Access Centres
Overburdened families, aging parents, more kids with disabilities, fewer resources – we need creative solutions. They can be found in: flexible funding models, building community and fostering trust through transparency.
Families understand that resources are scarce, whether naturally so, or politically imposed. We also know that existing resources are constantly under threat. We bear the brunt of this uncertainty as more and more restrictions are put in place in the name of equitable allocation. Because of this, policy is ‘suspicious’ – it nervously tries to prevent us from stepping outside prescribed boundaries, in fear of what exactly, I couldn’t say.
In any busy household, there is a fuzzy distinction (at best) between respite, personal support, educational activities – yet caregivers must pretend that we can break down our lives into these little compartments and engage in a level of paperwork and administration found only in the most bureaucratic of settings. The tasks are burdensome for families, and we live in constant fear that services will be taken away. The whole process feels paternalistic, small-hearted and adversarial.
If care programs were truly family-focused, they would assume that family members care for each other, know what they need and are competent enough to spend money judiciously. Allocated funding and resources could be accessed in the least restrictive way possible. And families would decide what is important, what is meaningful, what is supportive to them.
There are very tangible and meaningful ways that policy reform can demonstrate this:
- Allow families to select and train and pay people from within their communities and neighbourhoods and even families.
- Allow families to determine what level of training and skill is actually required. More experienced families know that personal care tasks can be easily taught and learned – often in less than a day – and are the least of what is required for quality care for our family members.
- Allow support staff and family members to use public transit, to drive, to socialize, to move about in the community – to act not just as companions and overseers but as bridges. As advocates for connection. Inevitably, staff will leave. While they are working, they should be building interpersonal connections that can be maintained long after they’re gone.
- As families age, many have come up with astonishingly creative solutions to compensate for the deep disappointment in long-term care options. Co-living arrangements, co-op ventures and extended circles of care, to name a few. Community service providers should be leaders in this realm – and can only attain that by seeking the expertise of families.
Last point: While service providers should trust families, families should be able to trust service providers. Families should know under what criteria they’re being evaluated, why they get or don’t get hours or funds, and how that compares to other families in similar situations. Allocation should be transparent. When individual contracts are negotiated, why are there non-disclosure clauses? Families should be encouraged to talk to other, not legally forbidden.
Current policy and practice reinforce an ‘every family for itself’ mentality and define disability or illness as a personal, private tragedy and not a community issue. Current policy and practice also reinforce class and socio-economic inequality – because it rewards those who advocate best, or loudest.
Our best hope for the future is to develop and implement policy that helps us work together, not further divides us.
Additional talking points:
- Redefine community: ‘community-based’ is a construct of the agency or institution. We don’t think of ourselves as community-based… the term describes workplace location – bringing the medical model into the home. Uniforms, name-tags, rubber gloves, record-keeping, evaluations, officiousness, skills, tasks – all in service of maintaining the efficiency and oversight of the institutional medical model
- Create a learning system: The system doesn’t learn from families, doesn’t enable families to learn from each other. Allow families to engage in a feedback loop as engaged participants, not survey respondents. Perhaps ethnographic methods?
- Remove barriers to accessing services: rural and non-urban areas face intense staffing and resourcing shortages. Some people can’t use their allocated hours – we could alleviate this strain by allowing people to hire family members and neighbours. Families should still be able to access funds.
- Redefine roles: Move from gatekeeping/rationing to advocacy/enabling
- Individualized funding works – we need more of it
- Preventative approach to family mental health and wellness: “Families have to break down before they get what they need” – preventative models of support include fostering community, empowering families, supporting creative decisions, connecting families, providing role models and peer support. In medicine this has proven time and again – investment in primary care improves outcomes. In this case, building community IS primary care.
- Better integrate the system: “Fractured system” – one ‘phase of life’ doesn’t know how it impacts another. From prenatal screening to infancy to early childhood to adolescence to young adult to older adult – why is each phase a surprise? Why are we shielded from the future? We need mentors. And better transitions.
(Thanks Claire, Janis and Donna – for providing direct input or indirect inspiration!)
Wonderful and so happy that YOU were representing families on this impressive panel, Jennifer! I’m honoured too, that you found inspiration in my work :) You hit the nail on the head with every point you made. Implicit in your message was that our family care be completely integrated with professional/medical systems, forming network centred care. Hopefully we’ll get there with voices like yours being heard by many. Go Jennifer!!!