Let me tell you a story. I have a friend who has a graduate degree, who loves her privacy but also dinner with friends and who loves to read as much as she loves going to the theatre. My friend is a wheelchair user. She needs help for what healthcare professionals term 'activities of daily living or ADLs'. That's a fancy way of saying that my friend needs assistance to bathe, use the toilet, get dressed, prepare meals and get in and out of bed. Recently, troubles with her home care service provider revealed to me what's wrong with home care today.
A few months ago, the agency providing personal support to my friend began telling her that it would take two people to wash her hair, due to "the weight of her head". Medically prescribed treatments would not be given if they were on an 'as needed' basis. Only regularly scheduled treatments during working hours Monday to Friday would be considered acceptable. If my friend had theatre tickets, no one would be available to help with her bedtime routine if it was after 11pm. And that was only the beginning of the growing list of rules that make my friend's life unliveable in her own home.
It seems that today, service provider agencies cannot meet the care demands of clients who have higher needs. Shrinking budgets and people with disabilities who are aging into even greater disability are merging with an aging demographic to put unbearable pressure on home care resources. Individuals like my friend are faced with the choice of asking family members to provide essential care in order to remain in the community, or to go into a nursing home - an arrangement that comes with too much care. I can't figure out the profile of someone whose home care needs CAN be met in my province. Our society has come to this: there is not enough care available at home and there is too much in residential care homes, the only other alternative. Family caregivers are being forced to pick up the slack in order to keep their loved ones at home and offer them a good quality of life.
Last year I had the privilege of serving on the Ontario Expert Committee on Home and Community Care. We produced a report called Bringing Care Home and I'm proud to say that it's full of good ideas and practical solutions to challenges like those faced by my friend. But there are other financial innovations that we need to scale, as well. A few months ago, the government of British Columbia raised the asset cap of people receiving disability pensions from $5,000 to $100,000. And that's not a typo. Now advocates in other provinces of Canada are lobbying their regional governments to follow suit. Having personal financial assets that are tax sheltered (such as in Canada's unique Registered Disability Savings Plan) or money earned through employment would not impinge on pension benefits so important for accessing medications and equipment. There are significant costs to having chronic illness or disability and these will never be entirely covered by pension checks. But personal assets combined with a major overhaul of home care provider systems will go some distance to giving people what they need in order to thrive in community.