Introduction

Webcast archive: Self-directed home care

This week, we talk about the importance of self-directed home care, and discuss why it is better than the alternatives.

Webcast archive: Self-directed home care

In this episode of Euthanasia & Disability, Amy Hasbrouck and Christian Debray discuss:

  • Self-directed home care: the key to autonomy
  • Contact your MPs

Please note that this text is only a script and that our webcast contains additional commentary.

SELF-DIRECTED HOME CARE: THE KEY TO AUTONOMY

  • The most common reason given for requests for assisted suicide and euthanasia in Oregon are loss of autonomy and inability to do tasks the person enjoyed.
  • Loss of autonomy comes when a person can no longer perform activities of daily living without help. These tasks include dressing, bathing, using the toilet, transfers to and from a wheelchair, cooking, eating, housework, laundry, and many others.
  • There are several models for providing help with activities of daily living.
    • Institutional care;
    • At home, with help from family caregivers;
    • At home, with agency-provided aides;
    • At home, with self-directed personal assistance services.
  • In an institution, everything is done for the person, who doesn’t need to worry about meals, laundry, cleaning, or shopping. There are always people around to socialize with, and there are often group activities to participate in.
  • On the other hand, the disabled person has no control over when or how her daily needs are met; when she wakes up, dresses, eats, uses the toilet and bathes. Nor does she have any say in how much time it takes to do these activities.  For example, if she has trouble swallowing, she may become under-nourished if an aide doesn’t have enough time to help her eat her meals.
  • In addition, the providers are trained according to a standard method, which may not meet the needs of an individual user. This can be dangerous where a standard technique, such as a certain kind of transfer, could cause harm to a particular person. Professional aides are often reluctant to listen to people with disabilities, who are the experts on what their bodies do and don’t need.
  • Many residents, families and advocacy groups see the conditions in some institutions as being like a warehouse, where high employee turnover and under-staffing with low-paid workers can easily lead to conditions of neglect and abuse.
  • Care in institutions is also more expensive than receiving equivalent care at home. A 2002 report by the Health Transition Fund of Health Canada, which summarized 15 studies comparing long term care costs in the home versus institutions, found that governments paid up to 60% less to provide care in people’s homes.
  • For these and other reasons, many people prefer to stay in their own homes. However living at home means that the house has to be made accessible, which takes time and money.
  • Having a family member provide intimate physical care, the cheapest alternative, may not always be a good solution. For example, many people would find it inappropriate for an adolescent boy to provide intimate personal care, such as changing a tampon, for his mother.
  • If a family caregiver has to give up a paying job to provide unpaid personal care, it can put a financial and social strain on the family.
  • Isolation in the household, lack of respite services, the constant responsibility of care and loss of income, and long-term conflicts among family members can create the ideal breeding grounds for abusive situations.
  • A second option for home-based care is agency-provided aides. In this model, an agency contracts with the individual or his family to provide certain approved services, which are carried out by professional aides.
  • While this is an improvement over institutional care, it has some major drawbacks.
    • The agency may send different people from day to day, thus creating inconsistency and disruptions in how services are provided.
    • The aide, who is employed by the agency, is not accountable to the disabled person for the performance of her duties. The aide may tend to do things “by the book” even if that is not the best method for the person.
    • The administrative costs for this service are high, decreasing the amount of time that can be used for direct service.
  • Another alternative is self-directed personal assistance services. In this model, the government pays money directly to the disabled person, who then hires, trains, supervises and (when necessary) fires her own employees.
  • This idea, often called the independent living model, was developed by disabled people back in the early 1970s. At that time, disabled students pooled their money and hired an attendant to help them with activities of daily living.
  • Soon, independent living centres, run by and for disabled people, were established to provide peer support to learn to manage their own attendants, and to advocate with government to direct home care funds to disabled people for this purpose.
  • Most jurisdictions now use a fiscal agent, which evaluates how many hours of service each person needs per week, collects timesheets from the person for their attendants, deducts taxes, and issues cheques based on a set, hourly rate of service.
  • The advantage of self-directed home care is that the person is in charge of who provides services, when and how. If the person wants to get up at noon and go to bed at 2 a.m., she can hire attendants who can accommodate that schedule.
  • On the other side of the coin, this system puts much more responsibility on the disabled person to see to her own needs. She has the option of hiring someone who is not a professional caregiver, but she’ll have to train her attendant in how to perform activities of daily living.  She will have to find someone to fill in if an attendant calls in sick, and she’ll have to handle filling out timesheets and making sure her attendants get paid.
  • And if there is a problem with an attendant, she will have to handle the problem, or fire that person. The disabled person is the boss.
  • For people who are concerned about losing autonomy, this is an effective way to reclaim control over the way activities of daily living are carried out.
  • Many people who are newly diagnosed with a disability or life-threatening illness are unwilling to accept the new limitations and count themselves as disabled, in part because of the stigma that comes along with disability. This can cut them off from potentially useful solutions, like independent living services, that they might not consider.
  • Seeing fewer and less attractive options, these people are more likely to see the only acceptable choice as assisted suicide.
  • The more we can normalize self-directed home-based independent living services, the more people will see this as a viable alternative to assisted suicide.
  • Unfortunately most care is still delivered in institutions. A lot of corporations, individuals and governments have a lot of money and resources invested in this way of doing business.  So despite the cost-effectiveness and individual preference for home-based services, it will take a long time and a lot of public demand to change this outdated public policy.
  • The Special Joint Committee on Physician Aid In Dying did not include home care services among their recommendations. However the Vulnerable Persons Standard does include home care, along with palliative care, as essential to reducing vulnerability of people facing disability and life-threatening illnesses.
  • This is yet another reason to ask your MP to include the Vulnerable Persons Standard in the new law governing assisted suicide and euthanasia.

CONTACT YOUR MPs.

  • Have you contacted your MP yet? Visit the parliament’s website at http://parl.gc.ca for phone numbers or email information, or send a free letter to your MP (no stamp necessary) at:
[Name of Member of Parliament] House of Commons
Ottawa, Ontario
Canada  K1A 0A6