Contents of this page:

Search

Quick Links

The Health Law Institute State of Advocacy for People With A Mental Disability in NS

by: H. Archibald Kaiser, Professor, Dalhousie Law School

(902) 494-1003 E-mail: Archie.Kaiser@Dal.Ca
Halifax, February 12, 1999

What Is Meant By "Advocacy"?

Basic Principles or Features

What is shared among the various types of advocacy and advocates? What distinguishes advocacy from other supportive relationships?

1. The Relationship Between Client and Advocate

The advocate is directed by his or her client

- the advocate is guided by the values and wishes of the client

• the advocate does not substitute his or her own view of the "best interests" of the client
• the advocate is primarily accountable to the client
• the relationship is voluntary and consensual or contractual
• limits may be imposed on the advocate's willingness or ability to act:
  • illegality of the instruction
  • impersonal (or professional) ethical constraints on the advocate
  • impossibility of achieving the client's wishes
  • incompetence of the client

1. The Connection Between Advocate, Client and Context

The advocate must be independent

• independence is measured by the advocate's loyalty to the client being unfettered: conflicts of interest should be eliminated
• independence is exemplified by attitude and secured by institutional, fiscal and other arrangements

Minimising the Distance Between Advocate and Client

The advocate must be accessible

• barriers to communication must be recognised and minimised
• the advocate must be physically available
• the advocate must have access to the client's information
• the privacy of the communication between advocate and client must be assiduously protected
• there must be no interference by others in the communication and relationship
• attitudinal, experiential and demographic obstacles to serving the client should be confronted

2. The Spirit of Advocacy

• The advocate must be zealous, committed and vigorous
• the advocate, in following the client's wishes, may choose conciliation, mediation and other cooperative, problem-solving approaches
• the advocate may also decide that such tactics will be fruitless and determine to be adversarial, resistant and vehement
• passivity, compliance and avoidance of difficult issues are not the hallmarks of advocacy
• the key must always be to consider what approach to achieving the client's wishes will be efficacious

3.

Protecting Vulnerability and Supplementing Strengths: Trying to Make a Net Contribution to Client Autonomy

• The advocate should, on balance, be able to bring skills, resources and supports to bear which have the potential of making a net contribution to the client's own self-advocacy and autonomy
• the advocate should add something to the client's ability to effectuate his or her own needs
• the advocate may protect the client from threatening forces or events
• the advocate should supplement the client's strengths in advancing his or her wishes
• the involvement of the individual (or group of individuals) should be maximised
• the advocate should assist in asserting the client's autonomy

TOP

Types of Advocacy: Some Definitions

Legal advocacy perhaps the best known type of advocacy, where a lawyer (or paralegal) as a professional pleader, brings a problem or a case before a decision-maker using the legal process

Social advocacy involves many of the same responsibilities as the lawyer carries in his or her role as advocate, but using non-legalistic measures in a range of fora not directly part of a legal process

Individual advocacy done on behalf of a particular person to enable that individual to attain his or her wishes

Systemic advocacy influencing systems to bring about change, at the institutional or legislative levels

Informal or advocacy occurring on a voluntary basis, often natural advocacy arising as a natural outgrowth of personal experience or relationship

Formal advocacy by persons with special goals, leadership, membership, standards and training, by persons paid to provide the service

TOP

Types of Advocates

Self-advocacy an individual acting autonomously on his or her own behalf to achieve his or her needs and wants

Consumer Group persons with present or former disabilities who advocates form organisations in institutions or the community to advocate on behalf of individuals or groups

Family as advocates informal advocacy by parents, children, spouses or siblings on behalf of an individual

Staff as advocates informal advocacy by individuals on behalf of others, where the advocate is not primarily employed to function as an advocate, but where he or she accepts the responsibilities of the advocate with respect to a client

Boards as advocates advocacy by a policy formulating and implementing authority of an institution (such as a hospital board) on behalf of a client or group

Substitute decision- the possibility of substitute decision-makers makers as advocates accepting the role of advocate for a person who is legally incompetent

Barristers as the traditional lawyer-client relationship, with the advocates attendant assumptions of client instructions and fidelity and advocacy by the lawyer

Objectives of Advocacy for Persons with a Mental Disability

1. promoting respect for the rights, freedoms and dignity of the person or group served by the advocate;
2. ensuring that client legal and human rights are recognised and protected;
3. assisting clients to receive health care, social service and private insurance entitlements;
4. enhancing client autonomy;
5. assisting clients in leading lives which are as independent as possible;
6. assisting clients in gaining access to supports which are the least onerous, least restrictive and least intrusive in the circumstances;
7. protecting clients from financial, physical, sexual and emotional abuse;
8. fighting the stigma that coincides with mental illness and intellectual disability.

TOP

People With A Mental Disability Some Demographic Realities

Mental Health Problems

Incidence: "One person in five will suffer from a mental illness at some time in his or her life", involving "over five million Canadians"1

Economic Cost: $8billion (1993), including direct costs from medical care and indirect costs, such as lost time due to disability and future productivity lost2

Intellectual Disability

Incidence: 815,000 Canadians have an intellectual disability; 30,000 of these people still live in institutions

Economic Cost: 343,000 people do not have the opportunity to work; total cost of segregation $4.6 billion in lost productivity and unnecessary social assistance3

Types of Problems Faced by Persons With a Mental Disability

The Overall Climate in Canada

"For centuries, persons with a mental disability have been systematically isolated, segregated from the mainstream of society, devalued, ridiculed, and excluded from participation in ordinary social and political processes.

The above description is, in my view, unfortunately accurate and appears to stem from an irrational fear of the mentally ill in our society. "1

"It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions.2

• Poverty and disability normally coexist

"persons with disabilities, particularly women with disabilities, are concentrated at the bottom end of the income scale: 54% of persons with disabilities of working age earn less that $15,000 a year"3

TOP

Particular Types of Problems or Issues

Living in the Community

Access to Benefits

• qualification for disability payments under public statutes and private insurance
• appears (or actions) concerning overall denials of benefits or refusals to fund particular needs

Housing

• finding (and residing) in appropriate housing

• Workplace Concerns - discriminating treatment

Treatment Issues

Inpatient Problems

• appeals of involuntary status or incapacity declarations
• access to hospital

• right to treatment within hospitals (or in the community)
• concerns over conditions of living in institutions, such as restrictions, visitation, mail
• complaints surrounding access to or rectification of health care records

General Problems in Treatment

• misdiagnosis or disputed diagnosis
• inappropriate treatment

Forms of Abuse or Professional Incompetence or Misconduct

• sexual abuse
• incompetence
• professional misconduct
• breach of confidentiality

Other Legal Proceedings

Incompetency problems

• Incompetent Persons Act
• Adult Protection Act

Family Law Problems

- custody and access

• child protection

Complains Under Human Rights Acts

• under federal and provincial statutes, discrimination on the ground of physical or mental disability isprohibited

Criminal Justice Involvements

Systemic Reform

• destigmatisation
• anti-poverty
• law reform

TOP

Selecting A Remedy for Problems Experienced by Persons with a Mental Disability

Sometimes the remedy will be self-evident

• the client's instruction is clear
• the route to achievement of the client's end is direct, well-travelled and short-term

In other situations, the choice of remedy will be more difficult, and the advocate will have to assess a complex range of variables:

• the social context
  • of the client and his or her family and community supports
  • of the problem
• the legal context
  • how is it that the problem arose and what are its legal dimensions?
  • what range of remedies could conceivably be brought to bear?

Available resources

• client's own emotional, cognitive and material status
• institutional availability of services to achieve a remedy
• clarity of and support for role
• what is it that one is expected to do and how does this expectation comport with one's role?
• is one acting purely for an individual? A group?
• is one to approach the problem at a systemic level?
• can one effectively combat any tendency towards deference to the status quo and hierarchy?
• is one to be a lone advocate or are there other advocates or alliances to assist one's effort on behalf of a client?

Availability of facts

• how can one establish an adequate factual foundation for one's position on behalf of the client?
• how available are: - records?
  • independent experts?
  • corroborative witnesses?
  • interpretative aids for medical, scientific, regulatory or other complex material?

Sometimes, more than one remedy will be plausible:

• does one pursue multiple remedies concurrently or sequentially?
• a matrix, identifying the problem and potential remedies may assist one in making tactical and strategic choices: see attached example

TOP

A Sample of Current Organisations

Performing Advocacy Services

Dalhousie Legal Aid Services

• Law School Clinical Law Service in Halifax
• law professors, lawyers, legal paraprofessionals and law students offer advocacy services
• for persons below poverty line
• traditional formal legal advocacy for individuals
• legal and social advocacy for systemic change as well
• occasional difficulties in service availability owing to student changeover and resource limits
• fairly comprehensive range of services for persons with mental disabilities
• organisational needs: more lawyers and resources

Nova Scotia Legal Aid Commission

• federal-provincial cost-shared service permitted by statute to offer any service through its approximately 15 offices
• primary concentration in criminal and family law; formal legal advocacy
• may offer additional services to persons with mental disabilities for review board hearings (civil and criminal), social assistance tribunals or residential tenancies
• occasional forays into social advocacy
• will respond on ad hoc basis to needs of consumers, subject to resources
  • to directions given by Legal Aid Commission and Minister of Justice for service ??
  • needs: inadequate resources even for existing mandate in family and criminal law

Lake City Employment Services Association

• vocational centre for people with mental health difficulties
• goal is to assist mental health consumers in improving quality of life through work
• operates Lake City Woodworkers and Lake City Employment Services Association
• interested in individual and systemic social advocacy, primarily on an informal basis to mental health consumers
• issues include: housing, social welfare benefits, job placement, health care special needs
• sees advocacy as integral to general mission, although resources are limited and advocates are lay people

Metro Resource Centre for Independent Living

• dedicated to giving persons with disabilities the support and methods to solve their own problems and overcome barriers: "empower persons with disabilities to achieve independence"
• has disability-related library
• focus on cross-disability, with more consumers having physical challenges and some having mental health needs
• operating Self-managed Attendant Services Pilot Project, Information and referral, Accessible Housing database, navigating the Waters employment programme and other services
• does do ad hoc informal individual advocacy, although emphasis is on improving self-advocacy skills
  • needs identified:
    • better social welfare supports
    • enhanced programmes for persons with mental health problems

Disabled Persons Commission

• does not generally provide advocacy services
• although does provide information, referral and follow-up to consumers
• principally concerned with policy and programme evaluation for persons with disabilities
• identified needs:
• more advocacy services for persons with mental disabilities, in existing organisations if possible

Provincial Mental Health Steering Committee

examining advocacy as part of comprehensive assessment of mental health policy belief in the importance of advocacy, but no settled policy on its place in the range of services offered to Nova Scotians

Nova Scotia Association for Community Living

provides informal advocacy for individuals on ad hoc basis also concerned with systemic advocacy emphasis is on assisting individuals and families to advocate for themselves no staff with direct advocacy responsibilities identified needs: links with anti-poverty groups resources to support self-advocacy access to legal advice, especially outside Halifax more explicit supports for persons with intellectual disabilities who also have mental health problems

N.S.A.C.L. - Community Inclusion Project

community based residential and attendant support system, intended to maximise self-determination and empowerment of individuals with an intellectual disability provides Halifax and Valley consumers with supports to live in the community, minimising control by others provides informal social advocacy for individuals on ad hoc basis for needs consistent with broad organisational purposes also concerned with systemic advocacy to advance interests of people with mental disabilities who want to live in the community

Canadian Mental Health Association, Nova Scotia Division

province-wide branch of national organisation, currently primarily devoted to systemic advocacy for mental health consumers has also provided advocacy for individuals, although the role is currently limited tendency now to offer information and referral proposing project to develop support network for individuals and families experiencing mental illness needs identified: more resources for individual advocacy more collaboration among organisations where there are multi-layered problems more educational opportunities for other organisations providing services to consumers

Halifax Branch, Canadian Mental Health Association

offers programmes to individual consumers, such as Sharing and Caring Drop In Centre (for persons with long term mental health needs) and Building Bridges (for consumers needing friendly support) no staff trained as advocates, although frequently try to assist members identified needs: more resources for staff to do advocacy advocacy to improve social welfare system advocacy for inpatients more support for initiatives such as the Community Advocates Network, an alliance of 60 community organisations concerned with poverty alleviation and social welfare reform

Dartmouth Branch, Canadian Mental Health Association

does informal advocacy on behalf of individuals in areas of social assistance, housing and utilities although more often engages in information sharing and referral identified needs: more training for volunteers, especially those with longer term dedication more systemic advocacy more advocacy services for individuals, with understanding that offering services will increase demand

The Self-Help Connection

provides information on self-help activities, resources and issues throughout Nova Scotia has assisted in developing mental health worker training programmes and participated in the Provincial Mental Health Steering Committee engages in ad hoc informal advocacy for consumers on a limited basis, given staff and resource shortages identified needs: broader recognition of advocacy as a health determinant more resources for individual advocacy more skills development for consumer self-advocacy more investment in mental health consumer organisations

Patient Representatives With Health Care Facilities

(QE II and Nova Scotia Hospital)

staff members address patient concerns related to hospital service listens to patients; explains rights, responsibilities and regulations; talks to staff and family members on client's behalf limited range of advocacy responsibilities; given role within hospital, limitations are imposed on independence and ability to follow client instructions

Hospital Clubhouse Projects

local psychiatric facilities have clubhouse model community support and service delivery offshoots some existing advocacy information is disseminated some limited informal advocacy for individuals is engaged in a supportive environment for self-advocacy is provided

TOP

Gaps in Current Advocacy Services

for Persons with Mental Disabilities

I Inadequate Resources

pervasive shortages of material support over the full range of advocacy services

II Lack of Coordination

many organisations offer advocacy services on an ad hoc basis, without strong linkages to others doing similar work some networks are being built, especially around social welfare issues

III Lack of Training

usually advocacy service providers possess valuable experience but seldom have formal training in effective advocacy techniques and strategies

IV Poor Recognition of the Importance of Advocacy as a Health Determinant and Indicator of Civil Well Being

although there may be some gaining recognition of the centrality of advocacy to independence, autonomy and the sensitisation of health and social welfare infrastructures advocacy has tended to be seen as an adjunct or add-on to core services

V Regional Disparities

in some parts of the Province, particularly the Halifax Regional Municipality, there is a richer range of advocacy supports other regions are not nearly so well serviced

VI Lack of Depth

advocacy needs to be offered as a multi-layered and complimentary range of services there is a need for the full range of types of advocacy services and advocates for persons with a mental disability

VII Role Awareness

there is insufficient explicit understanding of the principles, objectives and limits of advocacy many other important services are seen as advocacy, whereas they do not truly fit into an advocacy model

TOP

Future Directions in Advocacy

Services for Persons with Mental Disabilities

I

An Advocacy Commission

• using the model of the Ontario Advocacy Act
• meticulously planned, through a broad consultative process
• then repealed by a succeeding government

• attractions
• a comprehensive range of advocacy services with a consumer directed agenda

• problems
• may be seen as too bureaucratic and expensive

II

Investment in Existing Organisations

• may foster the growth of an advocacy climate within established energetic and well-intentioned organisations
• recognition of advocacy needs in terms of training and resources could heighten provincial capabilities
• risks are that existing patterns and problems could be replicated
• specialised resources still need to be made available:
  • duty counsel for detained persons
  • regional offices or travelling representatives
  • training for self-advocates
  • training for semi-formal lay and employee advocacy
  • library and internet services
  • generalised advice availability, on a 1-800 basis
  • specialised expert legal services
  • encouragement of consumer group formation
    • annual reports on the "State of Advocacy" for persons with disabilities
    • mental disability quality of service ombuds or monitors

1.World Health Organization, World Health Report 2001: Mental Health: New Understanding, New Hope (Geneva: World Health Organization, 2001)

2. Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624

TOP

Accessibility Select text / background: , , , TOP