CARP’s Recommendations

Zoomer | January 1st, 2006

The objective of CARP’s National Forum on Home Care, focusing on the informal caregiver: Putting a Face on Home Care, was to shine the spotlight on the informal caregiver, without whom the shift in healthcare across Canada from institutional care to home care is not possible.

Our goal during the June 25 forum was to develop recommendations for enhancing the well-being and effectiveness of the informal caregiver. These will be sent to all levels of government, the media, healthcare professionals and the general public.

For more information, phone (416) 363-8748 ext. 235 or 1-800-363-9736. To receive a copy, send $5 (shipping and handling) to CARP, 27 Queen St. E., Suite #1304, Toronto, Ont. M5C 2M6.

GENERAL RECOMMENDATIONS

  • To ensure effective home care, the role of the caregiver must be given primary attention.

  • Federal and provincial/territorial governments should develop a fiscal, planning and implementation partnership to overcome jurisdictional barriers.

    • COMPENSATION

    • People who have left employment to care for family members should receive tax credit adjustments for Employnt Insurance (EI) and CPP.

    • Governments should encourage companies to develop caregiver leave programs (e.g. flexible working conditions, partial or full leaves and/or compensation) for employees engaged in short- or long-term periods of caregiving.

  • Governments should develop direct payment policies to compensate family caregivers for work done, or for management of caregiving.

  • Drugs and other supplies available at no charge in hospitals, and needed by home care recipients, should be covered by provincial drug and health plans.

  • Increase tax credits to reflect real costs for all out-of-pocket expenditures incurred by informal caregivers who provide care at home for care recipients -Ð for example, for professional care and services, home modifications, assistive devices and any other related expenses.

    • STANDARDS
    • Federal and provincial/territorial governments should develop national standards for informal caregivers regarding working conditions and hours, safety, etc.

    • Community-based agencies should be given responsibility for educating caregivers on these standards and monitoring their enforcement.

    • Federal and provincial/territorial governments should develop a Bill of Rights for Home Care Recipients and for Informal Caregivers.

    • Community-based agencies should provide clear, understandable information to informal caregivers and care recipients alike, to ensure their “informed consent” regarding the treatment received at home.

  • If possible, care recipients must have the final say in their care at home. If the care recipient is incapacitated, the informal care-giver should have the final say.

    • TRAINING
    • Informal caregivers must receive all training in their homes.

    • Responsibility for teaching informal caregivers how to access support from their provincial healthcare and home care system should rest with community-based agencies.

    • Community-based agencies should be responsible for educating all informal caregivers about the disease or infirmity of their care recipient.

  • All informal caregivers, especially long-term caregivers, should receive the same training, and be accorded the same status, as paraprofessional healthcare/home care workers.

  • Doctors and their staffs should be kept informed by provincial/territorial governments on how to access the home care system and to provide support for informal caregivers.

    • SUSTAINING THE CAREGIVER

    • Provincial/territorial governments should develop, fund and widely publicize an information network for informal caregivers which can be easily accessed through a 24-hour toll-free number, by fax, website and e-mail, to provide ongoing training as required, as well as all other support, advice, advocacy and other needs.

  • Funding should be provided by federal and provincial/territorial governments to create a nation-wide, provincially-based outreach network of informal caregivers. This would allow them to share experiences including nutritional information, develop self-help networks and peer groups and meet other needs.

  • Community-based agencies must encourage informal caregivers to look after themselves through in-home programs on stress management, nutrition, finances, etc.

  • Informal caregivers need services (federally funded but provided by provincial/territorial governments) to ensure sufficient respite, transportation, home making, and proper nutrition.

  • Community-based agencies need sufficient funding from provincial/territorial governments to guarantee consistency of paid personnel assisting informal caregivers and care recipients.

    • RE-ENTRY

    • Governments must instruct healthcare organizations to assist informal caregivers (especially those providing care for over six months) in resuming their lives after caregiving.

    • These programs should continue for a defined period, addressing emotional, psychological, fiscal, educational and other pertinent issues, including training, updating and re-training for jobs and job interviews.

  • Governments should consult informal caregivers through forums, town-hall meetings, interviews, etc., to determine their emotional, employment and financial post-caregiving needs. The recommendations from these studies must be adequately funded and implemented by federal and provincial/territorial governments.

  • Governments and companies should work together to develop services, programs and policies to assist employees during their post-caregiving transition.

    • SEAMLESS INTEGRATION

    • The principles of the Canada Health Act should be extended to home care, so that home care, with its new centrality in the healthcare system, is fully integrated within that system. This can be accomplished either by extending the Act to encompass home care, or by creating a new federal act for home care, based on the principles of the Canada Health Act.

  • The legislation should also provide a guarantee of the highest possible quality of home care service, while protecting informal caregivers from exploitation, and care recipients from abuse.

  • A national framework should quickly be put together by the federal and provincial/territorial governments to seamlessly integrate all aspects of healthcare and home care services.

  • Federal and provincial/territorial governments should undertake expenditure and resource analyses to determine how current funding on healthcare can be most equitably distributed between institutional care and home care.

  • A national database containing the medical records of all Canadians should be created to allow easy access during emergencies and during hospital re-entries. This system should also be designed to provide information outside of Canada when required. Patients concerned about privacy should be able to choose to withhold their records from this database.

  • Racial, cultural and linguistic diversities must be respected within the home care system.

  • Students in primary and secondary schools should be taught healthcare, home care and care-giving.