These three pressures, which hover continually, threaten to destabilize the lives of the many caregivers trying merely to provide a decent quality of life for those they love. Public policy solutions can help slay these ghosts.

The first problem is that, on average, persons with disabilities, regardless of condition, have significantly lower and more sporadic participation in the labour force. They often have no choice but to rely on income security programs, which virtually guarantee a life of poverty for many. An estimated half million Canadians with disabilities depend on provincial welfare for their income.

The solutions lie in shoring up and reforming the disability income system. One option is to bolster and index welfare benefits for persons with severe disabilities to ensure that welfare does not equal poverty. However, a far better solution would be the creation of a new national income support program, run by the federal government and designed for those with disabilities. The new program would displace welfare for persons with disabilities. Provincial savings could be invested in disability supports to enable independent living.

There are some persons with severe disabilities who actually are employed—but they need to leave work occasionally because of episodic conditions, such as multiple sclerosis, AIDS or cancer. These conditions involve both remission, during which individuals function well, and recurrence, which can be debilitating. Current income programs make no provision for these up’s and down’s.

Possible reforms include changes to the Employment Insurance (EI) sickness benefit or to the Canada Pension Plan (CPP) disability benefit to allow more flexible workforce participation. A one-size-fits-all model for EI and CPP benefits does not accommodate the fact that most persons with disabilities want to contribute to society to the best of their ability and do not want to live in poverty.

The second financial pressure arises from employment-related insecurities for the caregivers. Many Canadians must reduce their hours or leave jobs altogether in order to carry out their caregiving responsibilities. They jeopardize their current income and future pension. Reform options include expanding the Compassionate Care Leave provisions under EI that allow up to six weeks paid leave to care for a gravely ill relative at risk of dying within 26 weeks. This measure could be expanded to permit leave for other caregiving circumstances, which are now limited to terminal illnesses.

Another possibility is a modest caregiver allowance. The United Kingdom and Australia, for example, pay a cash benefit to the family caregiver of persons requiring chronic at-home care. Ottawa currently provides a Child Disability Benefit, which delivers an annual maximum $2,455 per child to low-income parents with children with severe disabilities. This amount could be raised in recognition of the typically high cost of care. This type of benefit could also be extended to low-income households caring for adults over the age of 18 with severe disabilities.

The third economic strain derives from additional expenses linked directly to age or disability. These costs include charges for home care services, transportation for medical appointments, drug dispensing fees, technical aids and equipment, and structural modifications to a vehicle or residence.

There are both direct costs and hidden costs. Direct costs are readily itemizable. In some cases, they are offset by provincial programs or may be partially claimed under the federal medical expense tax credit. Hidden costs, by contrast, cannot be easily measured even though they are still very real. The federal government recognizes the additional hidden costs of caregiving by providing some relief through two income tax measures—the caregiver credit and the infirm dependent credit.

These measures are intended to help caregivers by reducing their federal income tax. However, these provisions afford no assistance to Canadians too poor to pay income tax. Turning these measures from non-refundable into refundable tax credits would ensure that all households—including the very poor—receive some money in respect of their caregiving costs.

All caregivers struggle with these three ghosts of poverty that shadow them constantly. While it may be no mean feat to provide additional aid to these households—particularly to low-income caregivers—extra assistance to help offset the financial burden of caregiving would be a welcome gift.