A woman caring for her older mother is told she cannot make a direct application to a specialized provincial home-care program because her mother needs a referral from a case coordinator. She waits 2 months before her mother gets assigned a coordinator, and then a couple more for assessments and a doctor’s letter. Finally, she submits the 10-page application form, which takes her 12 hours to complete, and is then told she will have to wait 2 to 3 months more to get a response.
Among older Canadians and their caregivers, stories like this are all too common.
Navigating our often-fragmented systems of support and care in Canada can be an arduous task, but it is especially so for older adults with complex health conditions. Many struggle on their own to find and access services or have to rely on families to do it. Canada needs, straight away, a dedicated strategy to transform the navigation of supportive services from a private struggle into a public responsibility.
For instance, take our health system: It works fairly well if you’ve broken your leg, but less well if you need help managing multiple chronic conditions. Older adults are more likely to have to move across care settings – for example, from hospital to a seniors’ residence or back home. They require the support of various professionals, including specialists in medical and social care, such as geriatricians or case coordinators as well as system bureaucrats. The onus is often on older adults and their caregivers to navigate access to needed services, and to coordinate and manage these services over time.
Navigation also entails dealing with multiple service providers. For instance, an older adult with dementia, living at home with family in Nova Scotia, might be assessed by the family doctor, then by a home-care coordinator from a public health authority. They might then receive home care that is overseen by supervisors from one or more for-profit home-care agencies, and perhaps receive information about dementia or access other services from the non-profit Alzheimer Society. The family caregiver might learn he or she can also receive some compensation from the provincial caregiver benefit program, and the older adult might eventually ask that person to assume power of attorney.
Working between and within programs and services in such situations, families complete forms, make appointments, contact professionals, prompt providers for assessment results or updates on the status of their case, and mitigate the risk of errors in bureaucratic processes, like paperwork.
Managing these tasks successfully requires an assortment of skills. Families must be highly resourceful, literate and persistent to navigate separate, unintegrated health care and social service systems. They need to know the right questions to ask, and must develop the ability to negotiate and be assertive with professionals.
In a recent IRPP study, service users and family members give powerful testimonials of the hurdles they consistently face in navigating health and social care systems. Many caregivers say the burden can be overwhelming.
In that study, I argue that as a society we vastly underestimate the economic and social costs involved – including the stress and frustration generated, and, for caregivers, the time that they could have spent taking care of themselves and their loved ones, or in paid employment.
Caregivers express increasing frustration with how supportive systems and services are structured and organized – especially when it comes to health care. Separate and uncoordinated services, complex and burdensome administrative procedures, and lack of user-friendly information are the main culprits.
What to do? Better information about available services is needed, but this is far from sufficient. Efforts to provide more integrated services in various sectors that are actually grounded in the preferences and needs of both service users and families (as opposed to the needs of systems or professionals) could have the biggest impact. But, so far, progress on this front has been incremental at best. In professional health care mandates, at least, recognizing family caregivers not only as care providers but also in some cases as legitimate recipients of care or services themselves (such as respite or navigational support), would be an important first step in this regard.
An immediate solution is for provincial governments to increase the number of dedicated system navigators, like those often made available to cancer patients to help steer them through various tests, specialist appointments and support programs. Navigation support could potentially be mandated as part of the responsibility of primary care teams, the diverse group of professionals engaged to provide comprehensive support once a person makes first contact with medical services. This could help place the onus for (and costs of) care coordination onto the system itself, and it could make governments more aware of the value of integrated care.
Recognizing that navigation challenges are not unique to health care systems, however, we might also ask: Is there a role for publicly funded social workers, even librarians, given their expertise in digital literacy and information-searching, and their accessibility within local communities?
The harsh reality is that older Canadians living with chronic illnesses, disabilities and cognitive impairment are regularly hindered, along with their caregivers, by the efforts required to access and coordinate fragmented health and social care services. It’s time for this burden to shift from a private one to a public one.
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