Home care: getting your parent the support they need to live independently

The Question: I’m getting really worried that my mom cannot cope at home. She is 85 years old and has severe shortness of breath from bad heart failure, but she has still been able to live independently. Unfortunately, she fell while walking up the stairs 3 days ago and now has trouble standing because of soreness in her knee. We took her to the hospital and there was no fracture found on her xray. The doctor referred us to a physiotherapy clinic but my mom has so much difficulty getting to and from her car that she cancelled her physiotherapy appointment. At home, she is also having trouble dressing herself, showering and cooking. We have asked her about home care help and maybe even a move to a long-term care home but she refuses to hear of it. What should we do?

The Answer: When illness requires people to accept support from caregivers, this realization can be difficult and troubling. Although people may deny their need for support, simple tasks such as maintaining personal hygiene and caring for themselves can easily become challenging without help from others.

In Ontario, Community Care Access Centres (CCACs) are the coordinators of homecare and community care for those in need of extra help. The costs of CCAC services are completely covered by the government and anyone, including doctors, patients and family members, can contact their local CCAC. There are 14 CCACs in Ontario and you can locate your mother’s CCAC by entering her postal code here or calling 310-CCAC (2222).

When you contact the CCAC, a Care Coordinator will discuss your concerns with you and arrange a time to meet with your mother and review the supports she needs. CCAC Care Coordinators are registered health professionals (nurses, social workers, rehab therapists) whose job is to help people find their way through the health system. CCACs use standardized tools to assess each person’s needs, including their personal values and goals, health concerns, decision-making abilities, memory, mood, non-financial resources and social supports.

The CCAC Care Coordinator would help your mother develop a care plan that could include services provided by the CCAC or involve arranging other services in the community. Services in the community – e.g. meals programs, homemaking help, transportation to medical appointments – are provided by community support agencies and may require a financial assessment and a co-payment.

If your mother needs services from the CCAC, there are different programs to help her. Since your mother is recovering from a fall, the CCAC could provide physiotherapy to help her with exercises to improve her walking, or personal support to help her with personal care such as showering and getting dressed.

Other types of services, depending on your mother’s health needs, might include nursing care, occupational therapy to identify medical equipment aides and improve home safety; social work to provide support for social and mental health issues; and nutritional counseling. CCACs also have very specialized care for people with more complex health issues such as nurse practitioners, pharmacists, and telehome care support, which provides a nurse to monitor vital signs for people with serious health conditions.

If your mother’s health condition deteriorates and she is no longer able to live at home, the CCAC will also help her apply for long-term care. CCACs are responsible for the application process, determining eligibility, and managing the wait lists for long-term care home beds in Ontario.

Although many services are available through the CCAC, there are a few important limits to take note of. With respect to nursing and personal support workers, there are limits on the amount of care your mother can receive from the CCAC. CCACs do not provide 24 hour care except for very short periods of time and in limited circumstances.

Levels of support provided to an individual will depend on their initial assessment and care place. For people who need the highest levels of care – e.g. people with multiple conditions who are completely unable to care for themselves – the maximum level of nursing service from a CCAC is 28 visits or 43 hours of care within a 1-week period. For personal support services, the maximum amount of care a CCAC can provide is 80 hours of service in the first 30 days and 60 hours for the next 30-day period. You can review the specific limitations on CCAC care here. People who require higher levels of care may be more appropriately cared for in hospitals or in long-term care homes.

You should also note that every region of the province is served by a CCAC and where you live determines which CCAC you can receive care from (find your CCAC here). Each CCAC offers different types of services and different levels of care to its community.  As well, some CCACs have had wait lists or longer wait times for services depending on historical differences in how the CCACs were funded. The government has recently increased funding to home care and is looking at a new and more fair model for funding CCACs. Whether this will address the waitlists or improve the quality of care within the CCACs is not clear. You can keep track of the quality of care in CCACs through Health Quality Ontario’s web-based public report. CCACs also produce an annual quality report that identifies their current performance and where they are improving quality of care.

As the family member of a potential CCAC client, it is essential for you to be an advocate for your mother and to provide feedback to the CCAC, be it positive or to raise concerns about the quality of the service. Your Care Coordinator at the CCAC is a key point of contact and you can learn more about providing feedback to the CCAC here: Feedback About Your Experience. If you’re hesitant to contact your local CCAC or are unhappy with the outcome of the feedback you already provided, you can contact the long-term care action line, where you will be referred to an independent complaints facilitator. This individual is meant to serve as a neutral mediator between you and the CCAC. If the facilitator does not resolve concerns, an appeal of CCAC decisions can be sent to the Health Services Appeal Board of Ontario.

Some individuals may prefer an alternative to the CCAC or may wish to supplement the services received. If this is true for you, home care can also be arranged through out-of-pocket payments to a health care agency or through the live-in caregiver program coordinated by the Canadian government.

Whichever way, there are many options for obtaining support for your mother. If she ultimately agrees to receive home care, she should be able to continue living at home safely and maintain a relative amount of independence. You and your mother should consider contacting your local CCAC or speaking with a health care agency to begin the process of arranging home care.

Ayodele Odutayo is a graduate of University of Toronto MD program. He has served on the Canadian Medical Association Committee on Health Care and Promotion. He will be attending the University of Oxford in October 2013 as a Rhodes Scholar, where he will study health policy and epidemiology.

Healthy Debate would like to thank Stacey Daub (Chief Executive Officer) and Anne Wojtak (Senior Director) of the Toronto Central CCAC for reviewing this article.