When it comes to managing the symptoms of Alzheimer’s, and caring for the people who have the disease, “universal” health care simply doesn’t cover everything.
“Families are often shocked that they are not going to get 100 percent of their needs covered by the government,” says Damian J. May, clinical director of Elder Care Navigators, a Toronto-based firm focused on helping people identify and access health-care resources. “When Canadians find out that their parent is going to be fed and have a roof over their head, but that’s it, that’s when they panic,” he adds.
Our southern counterparts don’t suffer that surprise.
“Families and caregivers in the States know that it’s all on them, and from the beginning, they’re looking to maximize their health-care dollars,” May says. “Canadians need to be educated, and it can be a very rude awakening.”
If a person is getting two free hours per week of care from the government, they probably are paying for an additional eight out of pocket.
A good safety net; but there are holes
In Ontario, Community Care Access Centres (CCACs) coordinate services for seniors, people with disabilities and those needing public health-care services to live independently, such as those with dementia.
CCACs use a Resident Assessment Instrument (RAI) to determine the extent of benefits people will be given through government-funded health-care programs.
The assessment is conducted by a social worker or nurse, and assigns a numeric value to the needs of a patient. Based on that number, the patient qualifies for services.
“There may be this many hours with a personal support worker [PSW]; this much time with a therapist; etc.,” May says. “In my experience, if a person is getting two free hours per week of care from the government, they probably are paying for an additional eight out of pocket.”
Our public health-care system is generous compared to some countries, but “the reality is that if you want to thrive as a senior, you are going to have to pay for private services,” May says. “The question is: what is the most effective way to do that?”
One way is to hire a Patient Care Navigator specializing in elder care. These private-practice professionals are increasing in Canada, but have been a common part of the U.S. health-care system for decades. Practitioners (usually social workers and registered nurses) aren’t regulated, although some, like May, are members of the U.S.-based National Association of Professional Geriatric Care Managers, which has a code of ethics and standards of practice.
Their strategy is to help clients maximize the offerings in the public system, and fill in the gaps with private sector services. Sounds simple, but “the problem is the health-care system is opaque. People who aren’t familiar with the system will find it confusing,” May says.
How Patient Care Navigators work
First, a Patient Care Navigator will want to assess your situation. That includes visiting you and your charge and family, as well as speaking with your loved one’s doctor and other care providers.
It also involves reviewing the services you already have in place (Is your mom enrolled in a day program? Do you have nursing help? Did your dad qualify for speech therapy? Etc.).
The meat of the assessment, for the caregiver, is in the recommendations — this is where you learn how you could make better use of services available in the public sector, and better access non-profit and private sector offerings, too.
May’s assessment can take 10 to 14 hours to complete and costs $799. With most Patient Care Navigators, you can take the assessment and run (meaning implement the recommendations yourself), or you can hire your Patient Care Navigator to implement them for you.
May charges $125 per hour to do that, but like others in his field you can work with him on retainer. For example, nine hours a month will cost you $599. That includes bi-weekly home visits, weekly updates with your family, arranging up to two third-party services (a PSW, speech or language therapist, for example) and supervising the care provided.
What takes a caregiver 10 hours to do, I can do in a couple hours.
May will also contact your charge’s physician once a month, give them an update, and write notes in medical charts, if required. This retainer option provides 24-7 access to May’s services.
“If my client calls at 2 a.m. to tell me Dad has gone to hospital, I’m at the hospital at 3 a.m.,” May says.
Why would you bother with an assessment?
Patient Care Navigators have bigger networks than most of us, “and what takes a caregiver 10 hours to do, I can do in a couple hours,” May says.
May had a client who suffered severe aphasia after a stroke. (Aphasia is brain damage that interferes with language expression and comprehension; it can also develop slowly as a result of dementia.) She wanted speech therapy, but she had to wait a month to get the initial assessment after which she found out she would qualify for an hour of therapy, one day a week.
She wanted five days a week, a couple of hours at a time, in her home. That level of care isn’t available through the public system.
She found it was going to cost her $5,000 per month in the private sector. She then hired May.
“My job was to research what was available,” May says. “Because of my resources and network, I found the same services for $1,200 a month.”
Patient Care Navigators can also help long-distance caregivers confirm the services they arrange are being carried out as agreed.
Another of May’s clients lives in Alberta, while their loved one, in the late stages of Alzheimer’s, lives in a long-term-care facility in Toronto. The client had hired PSWs to be with their charge for six hours a day but they heard from the care facility that the PSWs weren’t showing.
“I went and investigated,” May says. “I found out that the morning PSW wasn’t arriving at all, but was billing for services. The afternoon providers were showing up, but the services weren’t what the family wanted.”
The family wanted someone to get their dad moving around, to take him for walks and gethim socializing.
“Instead, the PSW was reading to the man while he lay in bed,” May says.
May got the elderly man involved in the IPOD project. This program didn’t replace all the PSW hours needed, but it did reduce them while also offering the socializing the man needed.
Bonus: that program is free.
For a listing of general Care Managers in Canada, click here
A Professional Geriatric Care Manager outlines how he helped one family move their aging mother into long-term care and secure the services she needed.
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