In this paper, the application of a principled framework to the relevant laws, policies and practices impacting older adults living in congregate settings illustrates how this group is unable to effectively access justice. This framework refers to the principles adopted by the Law Commission of Ontario – independence, participation, security, dignity and respect for diversity – which should underscore any approach to the law as it affects older adults.[2]
In an effort to influence both law reform and best practices, ACE examined legal mechanisms available in different jurisdictions, both within and outside Canada, with respect to the enforcement of rights for older adults in institutions.
ACE also held a series of focus groups and consultations with stakeholders to guide and inform our work. Using the information obtained from our research and the feedback from our meetings, we have developed an “access to justice” model for Ontario that utilizes the principled framework of the Law Commission of Ontario.
Although the phrase “access to justice” is ubiquitous, there is little agreement about what it means. Common features of an accessible justice system include: just results; fair treatment; reasonable cost; reasonable speed; capacity to be understood by its users; responsiveness to needs; certainty; effectiveness; being adequately resourced; and being well-organized.[3] ACE interprets “access to justice” in its broadest sense and supports Professor Reem Bahdi’s description:
Access to Justice Scholars have moved from a uni-dimensional focus on the procedural and cost barriers that prevent individuals from bringing their claims to court to a more holistic assessment of all aspects of the legal system. Focus has widened from simply an emphasis on “access” to an examination of “justice” as well. The trend is towards thinking of access to justice as three distinct yet interdependent components: substantive justice which concerns itself with an assessment of the rights claims that are available to those who seek a remedy; procedural aspects which focus on the opportunities and barriers to getting ones claim into court (or other dispute resolution forum); and, the symbolic component of access to justice which steps outside of doctrinal law and asks to what extent a particular legal regime promotes citizens’ belonging and empowerment.[4]
It is important to note at the outset that we are writing this report in advance of two important developments in the long-term care sector which likely would have influenced our findings and recommendations. First, the Ombudsman of Ontario will be releasing a report in the late summer of 2009 scrutinizing the Ministry of Health and Long-Term Care’s oversight of long-term care homes. Second, the Long-Term Care Homes Act, 2007[5] is expected to be proclaimed into force before the end of the year. The stated purpose of the new legislation is to enhance the quality of life for residents of long-term care homes by strengthening enforcement, improving care and increasing accountability. Although one set of draft regulations was recently released to the public for comments, we are still awaiting the second set. As the regulations provide the “nuts and bolts” to support the law, we do not know how the law will be finally implemented. Moreover, we can only speculate as to how the legislation will be interpreted and applied.
After a brief introduction to ACE, we will outline the methodology we employed for this project. We will then examine the regulation of congregate settings in Ontario. The next section discusses, in detail, the legal protections currently available to residents and why they are ineffective. A legal review of congregate settings and legal protections for older adults in four provinces in Canada, as well as Wales, Australia and the United States of America follows. Finally, ACE will propose its model of access to justice for older adults residing in hospitals, retirement homes and long-term care homes.
Advocacy Centre for the Elderly
ACE is a specialty community legal clinic that was established to provide a range of legal services to low income seniors in Ontario. The legal services include individual and group client advice and representation, public legal education, community development, and law reform activities. ACE has been operating since 1984 and it is the first and oldest legal clinic in Canada with a specific mandate and expertise in legal issues pertaining to older adults.
ACE receives, on average, over 2,500 client intake inquiries a year. These calls are primarily from the Greater Toronto Area but approximately 20% are from outside this region, and may come from any part of the province, as well as from out of province.
The individual client services provided are in areas of law that have a particular impact on older adults. These include but are not limited to the law related to: capacity, substitute decision-making and health care consent; supportive housing and retirement home tenancies; long-term care homes; patients’ rights in hospitals; consumer protection law; elder abuse; home care; and income support.
A primary area of practice for ACE has been advocacy and representation of residents in the long-term care system. One of the lawyers at ACE is a full-time Institutional Advocate, who provides advice to seniors considering moving to or living in various forms health care facilities or congregate settings.
Public legal education programs are directed to seniors and their families, as well as health professionals and other service providers working with seniors. These presentations and workshops may be on any topic of law within ACE’s practice areas. ACE also produces easy-to-read educational materials, such as booklets and pamphlets on seniors’ legal issues.
ACE staff also write papers for continuing legal education programs and engage in other writing on elder law. For example, ACE has produced an extensive publication entitled Long-Term Care Facilities in Ontario: The Advocate’s Manual. Now in its third edition, this manual is over 600 pages and also includes chapters on retirement homes, home care, and other issues such as substitute decision-making, powers of attorney, and advocacy. It remains the only comprehensive text in this area of the law in Canada. ACE is planning to release the next edition in 2010 or 2011, once the Long-Term Care Homes Act, 2007 has been enacted.
As part of its law reform mandate, ACE staff frequently participate in government consultations as stakeholder representatives for the seniors’ community. We also submit written briefs to policy makers and make oral submissions to legislative committees when new legislation or legislative amendments impacting our clients are proposed. For example, ACE has drafted submissions on various long-term care consultations, including a major brief on the new long-term care home legislation.
Methodology
The methodology was comprised of two main parts: (1) a literature review; and (2) focus groups and meetings with stakeholders who are knowledgeable about the institutional sector.
Literature Review
We conducted a comprehensive literature review of the issues affecting older adults residing in congregate settings by examining the following:
· National and international legislation;
· Policies and practices;
· Case law;
· Academic articles; and
· Web-based materials.
In addition to reviewing the laws and policies of Ontario, ACE examined four Canadian provinces: British Columbia, Alberta, Nova Scotia and Newfoundland. Outside Canada, we examined the laws of Australia, Wales and the United States of America. We chose these jurisdictions for a variety of reasons, including: language (these countries speak and write in English); similar legal systems; varying size (in terms of both geography and population); and noteworthy laws and/or approaches to institutional environments.
The purpose of the comparative literature review was to analyze different legal models to inform an appropriate access to justice model for Ontario. In other words, we did not want to reinvent the wheel, but wished to learn what has worked and what has not worked in other jurisdictions. Due to the time constraints of the project, our analysis was not exhaustive. It is fair to say that there most likely is a gap between what is outlined on paper and what happens in practice in other jurisdictions, as is our experience in Ontario.
Meetings with Stakeholders
We met with a range of stakeholders to obtain their thoughts regarding the rights currently available to residents and how the system should, or should not, be changed to support the enhancement and/or enforcement of the rights of older adults. We also emphasized our desire to learn about practices or initiatives already in place within homes that enhanced resident’s access to justice. Of paramount importance to our project, however, was speaking to residents in institutional settings, as this is the group who is the focus of this report.
Due to the tight timelines of the project and our limited resources, it is important to note that we were not able to meet with as many individuals and groups across the province as we would have liked.
As well, we had hoped to hold focus groups with older adults residing in hospitals. Unfortunately, we were unable to do so because the patient population is constantly changing and very few hospitals have a Patients Council or any other organized group with which we could liaise to organize a meeting.
a) Residents of Retirement Homes and Long-Term Care Homes
With respect to organizing focus groups in both retirement and long-term care homes, our aim was to choose a variety of types of homes in different geographic locations. In order to be respectful of the autonomous nature of Residents’ Councils, our first point of contact was with the individual Residents’ Councils to determine if they would be willing to be involved in our project. An explanatory letter about the research project and an invitation to participate in a focus group was sent by mail to the President of the Residents’ Council of the selected homes.[6] An example of this introductory letter is included in Appendix 1. Please note that this letter was slightly modified for each group of stakeholders. If the Residents’ Council agreed to meet, we then worked with the Council in contacting the administration of the home to advise them and to make the necessary logistical arrangements.
We encountered several problems in arranging the meetings. In at least one instance of which we are aware, our letter was opened not by the President of the Residents’ Council but by an employee of the home. We were also told by quite a few homes that letters addressed simply to the President and without a specific room number (we did not request this information) would take “a long time” to reach the resident. Some homes would disclose the name of the President while others would refuse to do so citing confidentiality concerns. It was not uncommon for several weeks to pass before our letter was received by the Residents’ Council. Another resident told us that we needed to get permission from the administrator of the home before we could meet with them.
Several Residents’ Councils declined our invitation. One resident at a long-term care home resident advised us that we could not visit due to the H1N1 Influenza outbreak. The home did not have any cases, nor were the ACE staff who wished to visit specifically targeted. Instead, the home had stated that no visitors except immediate family were allowed to visit the home. We are not aware of any such public health requirements. At another long-term care home, where a government imposed ban had recently been lifted with respect to the admission of new residents due to non-compliance, ACE was told that residents wanted to allow the home some time to make changes and that it would be counter-productive to meet at that point in time. This was unfortunate, as we felt that given their recent experience, they would have been able to provide us with a unique perspective into access to justice for their residents.
Residents of retirement homes tend to be more independent and capable of making decisions. Consequently, they are more likely to be able to go out into the community to seek assistance if so required. We therefore opted to hold fewer meetings in retirement homes than long-term care homes. In selecting retirement homes, we attempted to choose those with an active Residents’ Council and geared to lower-income residents. Two focus groups were held at not-for-profit retirement homes in Toronto where approximately 60 residents and seven staff members attended. With respect to long-term care homes, we conducted four focus groups with residents at for-profit, not-for-profit, charitable and municipal homes in Toronto, Kitchener and Port Perry, involving a total of about 80 residents and five staff members.
Each meeting had a different dynamic and level of resident participation, depending on a multitude of factors, including the size of the group, the personalities of attendees and the presence of staff. For instance, at one meeting there were approximately 50 residents and several employees of the home whereas other meetings had as few as four residents and no staff.
While we would have preferred to have meetings without staff members in attendance, this proved to be difficult. In the homes where a large number of residents were in attendance, the meetings were in open areas which were not private and where it was impossible to prevent staff from attending. Even when we asked staff to leave the room, they often returned for a variety of reasons.
With regards to the cultural diversity of the participants, nearly all of the residents were Caucasian. ACE had hoped to hold focus groups with residents at culturally diverse long-term care homes but this turned out not to be feasible due to language and cultural barriers. As well, the amount of time and resources available for this project were insufficient to be able to plan and pay for the translation of documents and interpretation services which would have been necessary to hold these focus groups. This would be an appropriate subject for future study.
In terms of general observations about diversity, we noted that the majority of participants were female: this is consistent with statistics on female residents in these homes. Not all of the residents were older adults as younger residents at long-term care homes attended our meetings as well. Most of those who actively participated appeared to be mentally capable of making decisions. A significant number of residents used mobility devices such as walkers or wheelchairs.
Finally, ACE had a separate meeting with a representative of the Ontario Association of Residents’ Councils. The Ontario Association of Resident’s Councils is a voluntary association of long-term care home Residents’ Councils which has approximately 270 Resident Councils Members. A Board of Directors comprised of residents from the member Councils governs the Ontario Association of Residents’ Councils.
b) Family Councils
ACE also felt it was important to consult with the families and, if applicable, the substitute decision-makers, of older adults residing in long-term care homes. More and more residents of long-term care homes are mentally incapable and unable to participate in the resident focus groups. By meeting with the substitute decision-makers and families of these residents, we were able to learn about the issues which affect them.
Family Councils are new in many homes and are not yet supported by the legislation (which will change when the Long-Term Care Homes Act, 2007 is proclaimed). We met with one Family Council at a home outside Toronto, as well as a representative of the Ontario Family Councils Program. The Ontario Family Councils Program is a support program for Family Councils across Ontario.
We were able to meet with two Family Council Networks (a group of Family Councils based on their geographic location within a Local Health Integration Network (LHIN)) at their annual regional meetings. We attended a regional meeting in the Hamilton Niagara Haldimand Brant LHIN where there were 65 participants representing 36 long-term care homes. We also met with 30 participants in various areas of the North East LHIN via videoconference.
Our goals at each meeting of both residents and families was to learn about any obstacles they might encounter when attempting to enforce legal rights of residents, the remedies they sought and their recommendations of changes which might improve the current system. We anticipated that not everyone would feel comfortable sharing their experiences or ideas in a public forum, and some would require more time to consider the issues raised; we therefore provided participants with a questionnaire. The questionnaire was anonymous and could be completed either during the meeting or sent to ACE afterwards. Please see Appendix 2 for a copy of the questionnaire distributed in long-term care homes and Appendix 3 for the version used in retirement homes. To date, we have only received four completed questionnaires.
c) Lawyers
ACE conducted a focus group at the beginning of this project with lawyers whose legal practices relate to elder law. In addition to sending the invitation to a large group of lawyers and posting it to the ACE website, a notice was also posted to the website of the Ontario Bar Association. The purpose of the meeting was to review common scenarios facing institutionalized residents and to brainstorm about the options available to older adults, their advantages and disadvantages, and ways to improve the system. Six lawyers were in attendance.
An article about this project was also published in Deadbeat, the newsletter of the Ontario Bar Association’s Trust and Estates Section. Lawyers were encouraged to contact ACE with any comments or ideas.
d) Industry and Seniors Groups
To determine whether our recommendations to the Law Commission of Ontario would be feasible and practical, it was imperative for ACE to obtain the opinions of industry stakeholders regarding the current remedies and enforcement mechanisms available to older adults, as well as ACE’s suggestions for reform.
Accordingly, we held one focus group with industry stakeholders and another with seniors’ organizations. Due to scheduling conflicts, we met privately with one industry stakeholder. A separate meeting was held with an administrator at a long-term care home who independently contacted us.
We were unable to meet with some stakeholders due to scheduling conflicts, bureaucratic reasons or lack of interest.
Summary
In total, we conducted 16 focus groups and meetings, involving a total of approximately 255 participants. A complete list of the participants can be found in Appendix 4. The feedback and information received from the different stakeholders was invaluable and will inform our final recommendations to the Law Commission of Ontario. We will incorporate the responses and opinions received throughout this report
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