Building on our experience and research, supported by the input of stakeholders, ACE submits that the failure to respect and protect the rights of older people residing in congregate settings occurs due to three primary factors: the power imbalance between older adults and service providers; the limited awareness of legal rights by both older adults and service providers; and ageism. To overcome these barriers, ACE recommends a multi-pronged access to justice model which is consistent with both our expansive interpretation of access to justice and a principled framework, as follows:

1. The independence, participation and security of older adults residing in congregate settings must be encouraged by providing them with the necessary information to understand their rights. As well, enhanced education must be delivered to staff and service providers across the province to ensure they: understand the rights of residents; respect those rights in their daily practice and facility policies; and disseminate the correct information to residents, family members and new staff.

2. An independent Health Care Commission responsible for the provision of education, individual advocacy and systemic advocacy in hospitals, long-term care homes and certain retirement homes[326] should be created. By having an independent third party assist residents with their questions and concerns, the Health Care Commission would promote the dignity and security of older adults. Individual advocacy would also foster the increased participation of older adults in their own decision-making about their care and accommodation. The education and advocacy functions of the Health Care Commission would also support respect for diversity by breaking down stereotypes and challenging discriminatory practices.

3. The jurisdiction of the provincial Ombudsman should be expanded to include hospitals, long-term care homes and certain retirement homes. ACE anticipates that the increased level of education and the assistance of advocates from the Health Care Commission would reduce the number of complaints to the Ombudsman. Nevertheless, oversight by the Ombudsman would provide an extra level of review for a population that is often otherwise marginalized.

4. The regulation of the retirement home industry is necessary to ensure that quality care is provided to residents, as well as creating effective mechanisms to enforce residents’ rights. Retirement homes that offer the same level of care services as long-term care homes should be regulated under the same legislation as long-term care homes, while all other retirement homes should be licensed in accordance with the levels of care services they make available. Included in this scheme would be a government-run complaints system to enforce the regulation of retirement homes.

5. The government needs to hear the voices of residents and their representatives to make certain that regulations and policies are meeting their needs. To accomplish this, the government should be required to form provincial advisory groups comprised of residents and their representatives and to meet with them on a regular basis.

6. Older adults must be afforded security of the person and be made aware of their legal rights in the event of findings of incapacity. The law governing capacity should be amended to require health practitioners to provide more detailed information on regulations to persons found incapable respecting treatment and admission to long-term care.

7. The transparency of the compliance and enforcement regime needs to be improved by strengthening the education, skill-sets and qualifications of compliance advisors. Detailed inspection reports should be made easily accessible to the public, by posting them on the internet and providing a central office from which hard copies can be obtained. Complainants should be provided with copies of the findings and reports of their own complaints.

8. To encourage meritorious litigation, the laws pertaining to damages in the civil system should be changed to permit actions without proving damages in the traditional context and allowing the court to award general damages.

Education

First and foremost, we consistently heard from all stakeholders that they lacked awareness of residents’ legal rights. Not only are these rights not known by the residents, their friends and family, but staff and management of the various congregate settings do not have a basic understanding of residents’ rights. As a result, many policies and practices in congregate settings may either be created without reference to the law or based on a misinterpretation of the law.

Without this awareness of residents’ rights by both seniors and service providers, residents are restricted in exercising their independence. The structure of congregate living settings often reinforces ageist stereotypes about older adults (e.g., all older adults in long-term care homes are sickly and incapable of making treatment decisions).

The lack of information about residents’ rights, coupled with policies that fail to reflect these rights, limits the opportunities of older adults to participate in a meaningful way at both an individual and group level. In turn, this affects the security of residents, as the environment in which they live may be overly restrictive. Although the principle of security includes an element of protection, that protection and care must be balanced, as overprotection may be abusive.

As previously discussed in this paper, Ontario has good law but bad practice. One way to combat this phenomenon is to equip residents with accurate and accessible information on a regular basis. Armed with this information, residents are in a better position to exercise their rights and force “good practice.”

We received several suggestions from stakeholders about ways in which to facilitate education and empower residents:

· Ensure hospital staff, especially discharge planners and social workers, are providing accurate information to older adults;

· Community Care Access Centres should be providing information about the rights and responsibilities of residents, substitute decision-makers and family members prior to admission to long-term care;

· Electronic resources, such as Youtube, should be utilized to provide information;

· Family Councils should take some responsibility for organizing information sessions about the rights and responsibilities of residents and family members;

· Standardized educational tools should be developed to save resources and to relay a consistent message;

· ACE should create more educational tools for residents and staff;

· Lobby law schools to offer elder law courses and expand their clinical programs to include elder law;

· Lawyers knowledgeable in the relevant areas of law should be retained to prepare and/or review educational tools;

· Information about the rights of older persons residing in hospitals should be posted in visible areas;

· Health professionals and health organizations should provide training in the area of residents’ rights; and

· The educational requirements contained in the Long-Term Care Homes Act, 2007 should be capitalized on. The Ministry of Health and Long-Term Care should develop specific educational programmes outlining the expectations in the area of training regarding residents’ rights.

ACE’s Recommendations

The importance of education cannot be overstated: information is power. The source of many of the problems encountered in congregate settings is poor education and the lack of accurate information.

The most important principle that needs to be conveyed to all stakeholders is the fact that seniors are people. Older adults are presumed to be capable of making decisions, and they have the right to make foolish decisions, just as people living outside a congregate setting do. ACE is of the opinion that many staff members and some families do not understand that older adults are allowed to take risks or make foolish decisions. Educational resources need to emphasize that residents’ rights are a two-way street: not only do they recognize the independence and autonomy of residents, but they protect staff from liability. For example, the fact that a capable resident is at risk of falling does not entitle staff to restrict the person from walking altogether. By resorting to unlawful actions to “protect” the resident, the staff violates the law.

ACE recommends the development of a standard curriculum, along with comprehensive training respecting residents’ rights, for residents, families and staff of long-term care homes. Residents’ rights information should be broadly interpreted to include information on related legal issues such as privacy rights, access to information, substitute decision-making and consent; it should not simply focus on long-term care home legal issues. The training should include segments on care issues that impact resident rights, such as dementia, mental capacity and care planning, as an understanding of this clinical information impacts the application of residents’ rights. Long-term care home licensees should be obligated to provide and make available both training to staff and information to residents and their families about residents’ rights pursuant to the Long-Term Care Homes Act, 2007.

We believe the Ministry of Health and Long-Term Care should develop and design standardized training tools to ensure consistency, although this should be done in collaboration with ACE, industry stakeholders, Residents’ Councils and Family Councils. This also has the benefit of not permitting any one player to selectively choose the information being relayed.

Education needs to be ongoing and held at times when individuals can properly process the information. Thus, there should be regular meetings provided by Residents’ Councils, Family Councils and/or advocates for residents and families. These meetings would be voluntary so individuals could attend as frequently, or infrequently, as they please.

Similar education programs should be developed for retirement home tenants and staff, focusing on retirement home tenancy rights and obligations. ACE recommends that retirement homes offering the same levels of care as long-term care homes be subject to the provisions of the Long-Term Care Homes Act, 2007 (see pages 102 to 106 for a detailed explanation about ACE’s proposal for the regulation of retirement homes) and, as such, the same educational programs as described above should be required. As ACE is also recommending provincial licensing of retirement homes that offer lesser levels of care services, similar education programs respecting tenants’ rights for residents, families and staff of retirement homes should be developed by the Ministry responsible for licensing of those retirement homes. This should be done in collaboration with ACE, the industry and representatives of retirement home tenants. Licensed landlords of such retirement homes should be obligated to provide and make available this training to staff and information to tenants pursuant to the legislation governing retirement homes.

Professionals, such as physicians and lawyers, also need to be better educated about the rights of residents as they are gate-keepers of information. Thus, ACE recommends that medical schools revisit their curriculum to include more information about the laws pertaining to consent to treatment. Law schools should be encouraged to offer courses on elder law and consider developing clinical programs. An example of such a program is the Center for Excellence in Elder Law at Stetson Law School in Florida, which offers opportunities for specialized courses and research projects for students who wish to focus their studies on elder law.[327] The Law Society of Upper Canada and the legal profession should also provide more opportunities for continuing legal education respecting elder law.

Given the prevalence of paternalism and negative stereotyping, ACE is supportive of a general media campaign to combat myths and raise awareness about issues affecting older adults. As the majority of people do not think about the rights of residents living in congregate settings until it is time for themselves or a friend or family member to move into such an environment, ACE does not believe a media strategy directed at the rights of residents would be practical at this point in time. Nevertheless, issues which pertain to both areas should be incorporated into a public education campaign (e.g., the right to give informed consent to treatment, the presumption of capacity