As the LCO highlighted in the Frameworks, persons with disabilities and older persons, as well as those who represent, work with or advocate for these individuals, have frequently noted the challenges that they face in receiving services and securing their rights, even when dealing with legislation or services that are intended to benefit them. These challenges have a variety of sources, including
- negative or stereotypical attitudes on the part of service providers or embedded in service systems;
- the inherent difficulties in navigating large and complex bureaucracies, especially for individuals who are in any way vulnerable or marginalized;
- power imbalances between those who provide services and those who receive them, again especially for vulnerable individuals;
- challenges arising from the intersection of other types of diversities, such as language, culture, racialization, gender, or many others with their older age or disability; and
- the inevitably occurring imperatives within large institutions, including resource constraints and conflicting institutional goals.
All of these barriers and challenges must be understood in the broader context that older adults and persons with disabilities may experience, in which they are more likely to be live in low-income and to experience social isolation and lack of opportunities for participation, and in which they may experience persistent silencing or stigmatization.
Consistent with this broader picture, during the LCO’s preliminary consultations, participants raised a number of linked concerns about the operation of Ontario’s capacity, decision-making and guardianship laws: the vulnerability of individuals falling within the system to violations of their statutory rights, sometimes with profound consequences; the challenges for individuals of navigating effectively through a very complex system; and the perceived shortfalls in dispute resolution mechanisms, enforcement and remedies. They pointed to a number of underlying causes for these problems, including lack of meaningful access to information for those falling under the laws, significant power imbalances between large institutional service providers and individuals who are often marginalized or disempowered, and a lack of effective accountability mechanisms for institutions involved in implementing the law. These concerns have been highlighted throughout this Paper.
As has been emphasized throughout this Paper, concerns about access to the law are all the more pressing in this area because of the profound effect of legal capacity, decision-making and guardianship laws on many aspects of the lives of those they touch.
As a result, one of the key priorities for reform identified during the LCO`s preliminary consultations was the provision of supports to enable individuals to more effectively access their rights under the law. Particular emphasis was placed on developing systems, policies or practices that would ensure that:
- individuals whose rights were potentially affected by these laws had meaningful access to information about the law, its potential impact on them, and their options for pursuing their rights;
- both individuals directly affected and those who provide them with supports receive assistance in navigating the often complex systems for capacity assessment, entering or exiting guardianship, or challenging the activities decisions or activities of SDMs;
- individuals with disabilities that affect their abilities to identify or articulate their needs and wishes receive supports and accommodations to assist them in this respect; and
- where individuals must deal with lengthy, procedurally demanding or multi-layered legal structures in order to resolve disputes or enforce their rights, that they receive the assistance necessary to ensure that they can meaningfully advocate for their rights.
These issues are the focus of this Chapter.
This Chapter focuses on formal supports. It is important to acknowledge the very extensive and vital informal supports that are provided by family and friends. As the O’Sullivan Review emphasized,
There can be many benefits to this type of [informal] advocacy relationship. As the advocates in this case are likely to know the vulnerable adult very well, including his or her personal history, special needs and circumstances, they are particularly able to understand the vulnerable adult’s needs and desires. Further, the relationship between these individuals is likely to be ongoing, which lends stability to the advocacy relationship. In addition, it is difficult to replace the bonds of love and trust that normally exist in family relationships and friendships which foster well intentioned and zealous advocacy.
However, the challenges that have been identified with access to the law in this area highlight the inherent limitations of placing so much responsibility for supports and advocacy on family and friends. It has been pointed out that there may be tensions between the role of informal advocate and the non-advocacy roles that friends and family members play, including informal caregiving. Further, as was discussed in Part Three, Chapter II, the responsibilities that are already placed on family and friends are enormous, and very challenging in the context of limited existing resources. Many family and friends who have struggled to advocate for and support their loved ones would benefit enormously from assistance in carrying out this role.
Issues related to supports are clearly closely connected to those addressed in the chapters on capacity assessment, appointment processes, dispute resolution, and information and education. Certainly the simpler and more transparent are the systems for rights enforcement, appointments and assessments, the more likely that those affected will be able to access them without extensive supports. More comprehensive systems for proactive monitoring and oversight of SDMs or regular reassessment of capacity will reduce the need for individuals to independently navigate dispute resolution and rights enforcement systems. One must view the system as a whole. Ontario’s current system is one of very considerable complexity: it has many procedural safeguards and mechanisms for challenging decisions, but has few proactive or supervisory mechanisms, and levels of support and advocacy available to individuals vary considerably across the system.
- QUESTION FOR CONSIDERATION: What types of supports are most important for assisting persons falling within this area of the law to understand and assert their rights? Should the focus of supports be on provision of accessible, timely and appropriate information; assistance in navigating complex systems; supporting affected individuals to articulate their values and wishes; support to advocate for their rights; or some other needs?
B. A Little History: Advocacy, Law Reform and the Current Legislative Scheme
As has been noted elsewhere in this Paper, the need for supports to ensure effective access to the law was identified during the development of the current legislative framework, and was initially addressed through the Advocacy Act and accompanying provisions in the Substitute Decisions Act (SDA) and the predecessor statute to the Health Care Consent Act (HCCA). A review of this legislative history illuminates both the current challenges with the legislation, and the difficulties in designing and implementing effective supports in this area.
1. The Fram Report and the O’Sullivan Review
In late 1986, the Attorney General of Ontario announced a Review of Advocacy for Vulnerable Adults, responding to concerns regarding “an unmet need for non-legal advocacy for vulnerable adults living in institutional care settings and the community”. Advocacy has been variously defined, but at its most basic, it is a mechanism for ensuring respect for rights; promoting participation, empowerment and accountability; and facilitating creative and practical problem-solving in laws or systems that address vulnerable and marginalized groups, including persons with disabilities and older adults. As such, it is connected with broader notions of access to justice, and a consideration of the elements of advocacy can make an important contribution to reform of laws, policies and practices affecting these groups.
Father Sean O’Sullivan was asked to report back, within six months, on the best method or methods for delivering advocacy services, including considering ways in which advocacy might be co-ordinated with existing case management and other service delivery systems, as well as existing community legal and volunteer advocates.
Interestingly, the issue of advocacy had initially been referred to the Fram Committee, which was considering reforms to substitute decision-making laws, highlighting the importance of the connection between this area of the law, and advocacy. When that Committee had difficulty reaching consensus over a number of months and it appeared that progress on the original mandate was being delayed, the independent review was struck. Nevertheless, the Fram Committee did important preliminary work in identifying principles and objectives for advocacy, as well as identifying key points where advocacy was required. The Fram Committee identified the role of advocates as explaining the significance of the legal step that was being taken and the legal options available to the individual, and where appropriate putting the individual in touch with legal resources. The Committee recommended the provision of advocates to affected individuals at a number of points in the processes surrounding capacity assessment and substitute decision-making, as follows:
1) court appointment of guardians or conservators;
2) termination of conservatorship or guardianship;
3) order for assessment and enforcement;
4) prior to an assessment of capacity for statutory conservatorship or powers of attorney for personal care;
5) refusal of substitute decisions about treatment; and
6) annual visit to all persons under guardianship or a POA for personal care.
The Fram Committee recommended that, given the importance of advocacy to the effective implementation of the SDA, the SDA not come into force until the Advocacy Act had been implemented.
The O’Sullivan Review focussed on social rather than legal advocacy, and on formal rather than informal advocates. It identified four basic principles for advocacy:
1) It must be client directed: the actions of the advocate must be guided by the instructions of the client and the advocate must serve the client on a voluntary and consensual basis. The advocate should not substitute a “best interests” approach for the instructions of the client.
2) It should be independent: in order to avoid any potential or perceived conflicts of interest, advocates should be administratively and financially independent of the human service delivery systems that they must advocate within.
3) It should be accessible: clients must be able to access advocacy both from within institutions and from the community, and advocates must be able to freely communicate with clients without interference from others. Accessibility also includes protections for client confidentiality, and the ability of advocates to access (with client consent) necessary records and individuals.
4) It should be neither adversarial