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THIRTEEN

Institutional Living

“Life must now follow a time-table. This hospital-like atmosphere can cause stress, anxiety, depression and feeling of lost dignity and self-worth.”

“The availability of publicly supported institutional care and the absence of publicly supported home support services have resulted in this country having the highest rate of institutional care in the western world. This situation can be corrected.”

“The group home is apparently something akin to a Dickensian style Oliver Twist house for the derelicts of this world. The diet is apparently pathetic, there is no training whatsoever and in fact they sit around and vegetate all day and every day. We have subsequently kept Peter at home.”

“The warehousing of disabled Canadians in institutions without the freedom to choose or attempt less costly alternatives is a denial of basic human freedom, a degradation of our national humanity and a waste of precious human resources.”

102

DEVELOP STANDARDS OF CARE FOR LONG-TERM INSTITUTIONALIZATION

RECOMMENDATION:

That the Federal Government through the Department of National Health and Welfare, IR cooperation with the Provinces, consumer groups, professional associations and voluntary organizations, develop guidelines for standards of care in long-term institutional settings.

Many Concerns: Throughout its hearings, the Committee heard man~ concerns about the quality of treatment that disabled persons receive in long-term institutional care, and in "homes for special care". It was obvious that, depending on the particular institution, a disabled person can receive care that ranges from excellent to horrible.

Standards Needed: The Department of National Health and Welfare has already established Guidelines covering the following health services:

• Child and adolescent psychiatric services in general hospitals.
• Adult psychiatric services in general hospitals.
• Burn units.
• Detoxification units.
• Geriatric day hospitals.
• Rehabilitation medicine units.
• Spinal cord injury units.
• Cardiovascular services.

Long-Term: The Department should now begin developing standards for long-term institutional care, with special emphasis on the following problems:

• Legal Access: At the present time, some individuals have no access to legal assistance. In many cases, disabled persons are not directly informed of the legal services that can be made available to them.
• Privacy: Some institutions provide individuals with almost no privacy, and few provisions are made to protect personal property.
• Activities: In most homes for special care, there are no activities whatsoever to keep disabled persons occupied during daytime hours. This problem is compounded by the fact that many of these homes are in rural, isolated areas where there are few community services.
• Placement: Serious problems are caused by the fact that young physically disabled persons are being placed in institutions which care for the chronically ill, the mentally retarded and the elderly.
• Refusal: It is a fundamental principle of Canadian law that medical treatment can only be given with the informed consent of the individual who is to receive the treatment, if he is an adult person capable of giving consent. For children, or people who are considered legally incapable, the parent or legal representative can consent, within a framework of safeguards for the individual. At any time, a person or his representative may legally refuse to take some particular treatment. However, few disabled persons are aware of their rights within an institution. Institutions do not inform a person about his or her right to refuse a treatment.

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103

STUDY THE COST-EFFECTIVENESS OF DE-INSTITUTIONALIZATION

RECOMMENDATION:

That the Federal Government, in cooperation with the Provinces, initiate in 1981, a study to be completed within one year to establish the cost effectiveness of de-institutionalization and, to this end, determine:

• The present cost of providing institutional care to disabled persons.
• The number and percentage of disabled persons who are currently in institutions and who, with varying levels of community support services and adequate housing, could live in the community.

Vital Information: This recommendation goes hand-in-hand with two others -- 75 and 76 -- made regarding “independent living”. Experience with de-institutionalization programs in the United States indicates that significant savings can be achieved wherever disabled persons are able to leave the institution and live independently. This issue should be central to the Government's long-term policies and programs for disabled persons. If it can be clearly established that de-institutionalization is more beneficial and cost-effective, on a large-scale basis, then the Federal Government should give high priority to such a policy. Before this can be done, solid data is required to fully substantiate the economic advantages.