An information booklet compiled by Advocacy Services in partnership with Gateway Services and Disability and Community Services.
Note: This document was assembled from records to allow contributors to make comment directly onto the document using “Word tools, track changes”. At the time of distribution it was the most complete word version of the document. If you notice that the document differs from the printed booklet please let me know. Illustrative quotes are not included in the document.
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The provision of independent advocacy services is an important safeguard for protecting the rights of people with a disability. These rights are enshrined in the United Nations Convention on the Rights of People with Disabilities (May 2008) and also provide the basis of the principles and standards contained in the Tasmanian Disability Services Act 2011.
The Disability Services Act 2011 states that people with disability have the same right as other members of society to make and actively participate in, direct and implement the decisions which affect their lives (go to footnote). Advocacy is one of the keys to ensuring that people with a disability are able to participate in decisions about the services they receive, and the Disability Services Standards require that services be designed and administered to ensure that access to advocacy support is available where necessary (go to footnote).
The National Disability Strategy, an initiative of the Council of Australian Government (COAG), sets out a 10 year national plan for improving the lives of Australians with disability, their families and carers. The Strategy outlines the importance of advocacy services in enabling and supporting people with disability to safeguard their rights and overcome barriers that impact on their ability to participate in the community (go to footnote).
Ensuring that people with a disability have access to an advocate provides an important driver for continuous improvement in the quality of disability services. Service providers have an obligation to remind people with a disability that advocacy supports are available when they are making decisions about the services they receive, or other significant life matters. This will help to guarantee that consultation – with the option of support from an advocate – is the foundation for all decisions related to service provision and development.
The Tasmanian Government provides funding to Tasmanian advocacy services through Disability, Housing and Community Services within the Department of Health and Human Services. The Australian Government also funds advocacy services for people with a disability.
This booklet was originally
developed in May 2007 to ensure that the role of advocates and the
framework under which they operate is understood by the Tasmanian
community, including the disability sector. In late 2007/early 2008, an
external review was conducted of Disability Services in Tasmania
resulting in publication of the Operational
Framework for Disability Services in 2009, which underpins the disability reform process and provides a clear direction for service provision into the future. The Framework focuses on building partnerships with people with disability, their families and carers, and the community sector with an emphasis on human rights and improving outcomes for people with disability. The Framework highlights the significant role that advocacy services play in protecting the rights and interests of people with disability. The emphasis is on enabling people with disability to make their own decisions, speak on their behalf, understand their rights, and acquire new skills (go to footnote)
As a result of this, there have been extensive reforms across the Tasmanian disability sector as the recommendations from the Review have been implemented. This has resulted in a new service system, and therefore there is a requirement to update this handbook so that it aligns the new service system, particularly in relation to the role of the Gateway Services.
To illustrate some of the common situations faced by advocates, and some of the myths about advocacy, hypothetical case studies have been included throughout the booklet. These case studies appear next to the relevant topic. The case studies are hypothetical, and are not intended to be followed prescriptively. They may be used as a guide, and should help to clarify the role of advocates in real life situations.
Advocacy is speaking, acting, and/or writing to promote and defend the rights, needs, and interests of people. The primary aim is to promote advocacy by assisting people to speak for themselves, but if they are unable to do so, an advocate speaks on their behalf. Advocates present things from the person's perspective.
Kevin Stone (2002) suggests that being an advocate can involve three separate functions, namely:
Strategies involved with standing beside people can involve:
Strategies involved with standing behind people can involve:
Strategies involved with standing before people can involve:
Assistance, support and representation are all forms of individual advocacy. Individual advocacy focuses on the specific needs and rights of individuals and provides an environment in which individuals with disability can assert their rights, to challenge the decisions and actions which restrict their opportunities and to obtain justice and equality in their daily lives.
Systemic advocacy focuses on influencing and changing the systems - including government laws and policies, departmental procedures, generic community and disability service practices – which may be adversely affecting people with a disability and their families.
The principles of advocacy for people with disability in Tasmania are:
The Tasmanian Government, through Disability, Housing and Community Services, currently funds three advocacy services: Advocacy Tasmania, Speak Out Association of Tasmania and the Association for Children with Disability (ACD).
The Commonwealth Disability Program of the Department of Families, Community Services and Indigenous Affairs (FaCSIA) provides additional advocacy services to people with disability. Under this program funds are provided to Advocacy Tasmania, Speak Out Association and Citizen Advocacy.
Advocacy Tasmania and Speak Out Association of Tasmania have similar models of advocacy, though each organisation has a unique emphasis, or mix of functions, as described in Section 6 below.
The advocacy services provide advocates to assist individual people who have a disability as defined by the Tasmanian Disability Services Act 2011. This includes assisting people to raise complaints or concerns, speaking on behalf of people when asked and support with self advocacy.
Each advocacy service provides systemic advocacy on issues impacting on the person or a group of people. This work stems from the case work carried out by advocates on behalf of individuals, and by any other means which identify issues that can adversely affect the person or group. Advocacy services funded by Disability, Housing and Community Services have membership on each of the Area Advisory Groups so that they can be involved in planning for services for people with disability by area, and at a state-wide level.
All the advocacy services except Citizen Advocacy provide rights and advocacy education, information and service promotion activities to people with a disability, families, service managers, support staff and other stakeholders.
All advocacy organisations are involved in supporting people to develop self-advocacy skills and active participation in the decision-making and consultative structures of the services they use.
Advocacy Tasmania (ATI) is an independent, community based advocacy service that has been operating since 1991.
ATI has five Advocacy Programs:
ATI also has two special projects
ATI’s primary role is to provide advocacy to individuals in the various target groups. In 2009/2010 ATI assisted over 1250 people with individual advocacy, with the Disability Program assisting 480 people. In 2009/2010 ATI and Speak Out each received funding for an additional advocate under the Sector Reform Project to help safeguard the rights and interests of the residents of the State Government run day support and respite services through the transition to non-government service provision.
ATI is involved extensively in systemic advocacy. In 2009/2010 this included:
ATI also conducts education and group work. In 2009/2010 ATI facilitated education and group work sessions involving 5523 participants. Of these the Disability Program worked with 1023 participants.
In group work ATI was involved in running residents’ groups in both government and non-government run residential facilities and workers’ groups in business services and day options services.
The Association for Children with Disability (ACD) is a state-wide organisation providing advocacy, case management, information, training and support for families with a child or children with disability. ACD was established in 1997, it began as a support group for parents with children with disability. Since then the organisation has become incorporated, employed staff to support and empower families/carers and grown in stature as a service provision organisation. ACD's direction is dictated by the needs of children with disability and their families/carers.
ACD employs staff with knowledge, experience and expertise in working with families/carers and disability and is governed by a Board of Management who bring a relevant range of professional backgrounds and expertise, also including a number of parents/carers of a child or young adult with disability.
ACD staff work to a Family Empowerment Model, a social model that focuses on strategies by which families use assistance to identify and achieve self-defined goals. ACD believes that the most important needs of the family and individual members of the family are those identified by the family/carer, not the professionals.
The guiding principles of ACD are choice of, access to, and equity of all services for all Tasmanian children, irrespective of their disability and regardless of where they live.
ACD’s Family Advocates provide services in the South, North and Northwest of Tasmania. ACD is primarily funded by DHHS.
The organisation provides:
ACD provides a fee for service, ‘Working with Families’ training and information package to anyone who works with families/carers who have children with disability, ensuring parent perspective input into professional development and training sessions.
ACD also provides training in the use of the ‘Participation Model’ Beukelman and Mirenda (1992, 2005) as a tool for identifying how a child or youngperson is participating in any environment on the following four levels:
Citizen Advocacy is a federally funded community group which provides support services for individuals within the Launceston area which are provided bysuitably skilled advocates.
Citizen Advocacy employs a small team of staff who seek out suitable individuals who may form meaningful, pro-active and supportive relationships with people with disability, who are homeless, institutionalised or have a reduced capacity to represent themselves and therefore requireassistance to have their needs met.
Whilst Citizen Advocacy does not maintain a Wait List, it actively pursues suitable advocates for all who request the service.
The types of support provided are diverse and may include, but are not limited to assistance with:
Citizen advocates may also take on formal roles/relationships such as Guardian or nominee for Centrelink payments.
Speak Out provides advocacy support to people with disability.
Speak Out aims to support people who have disability to:
This is achieved through one-to-one support, self advocacy skills development and community education.
Speak Out offers support for:
Individual advocacy is provided when a person with disability feels that their needs are not being met, that they have been treated unfairly or that the person’s supports have broken down and the individual is at risk.
Due to its extensive membership throughout Tasmania, Speak Out is able to provide opportunities to facilitate effective community consultation with people with disability/and or their family on the issues that affect them.
Ideally advocacy usually involves a conscious choice on the part of a person. It usually happens because a person feels their rights are being violated and decides to act for themselves (self advocacy) or have someone, such as an advocate, act for them. In the usual course of events the advocate takes their instructions from the person they represent and therefore the advocate works at the direction of that person. The advocate’s mandate to act (legitimacy) comes directly from the person with disability asking them to take certain actions on their behalf.
As a rule of thumb, an advocate has a mandate if the client or his/her guardian can:
The exception to this is where the person, whose rights are being violated, cannot direct the advocate. Due to age, intellectual or cognitive disability, dementia or mental illness, the person may not understand that their rights are being violated or be able to easily communicate their concerns. In this instance, someone else may see the violation and take it upon themselves to act. They might advocate directly for the person or they might contact someone else such as an advocacy service to do so.
In such situations an advocate may act without formal authority ‘in the best interests’ of the person if they strongly believe that the rights issues are unequivocal. This might be in cases of abuse, or where documented policies, practices or standards are not being followed (e.g. a person’s right to receive correct medication or to participate in meaningful activities during the day). In these situations advocates must be able to justify why they are acting without a clear mandate from the client.
From the human rights approach, older people and people with disability who are in need of high levels of support have the greatest need for an advocate. The right to an advocate is not a wavering one. It is not dependent on the vulnerable person’s ability, or inability, to access, engage, instruct or direct an advocate. Advocacy is a safeguard for vulnerable people to ensure that they are safe respected and have their needs met.
If the person has a limited ability to understand or communicate, the advocate should seek guidance from someone close to them. Sometimes this may be an informal arrangement where an unpaid carer or a close relative can approve the actions of an advocate where those actions do not require a legally binding decision on behalf of the person. If there is no one who can provide the necessary authority and/or the rights issues are not clear, a substitute decision maker, with the legal authority to make decisions on the person’s behalf, should be sought (Disability Action Inc, 1997 (1)). In Tasmania this is through the Guardianship and Administration Board (GAB) who can appoint a guardian to make personal decisions or an administrator to make financial decisions on behalf of the person. Where the person has no suitable relative or friend to act as a guardian or administrator, the GAB may appoint the Public Guardian or the Public Trustee to make decisions on behalf of the person. Appointing a guardian or administrator is seen as a 'last resort'.
Advocates are often involved in situations where, from an outside perspective, their role may not appear to be clear-cut. Two common situations are discussed below. These are:
Even though advocates work at the direction of the client it is still possible for them to work on behalf of people with profound disability who cannot indicate their wishes.
Advocacy is issue-based, that is, advocates work for people to resolve a particular issue or group of issues. To do this the advocate must first have a referral from someone relating to an issue or issues. One of the misconceptions of advocacy is that advocates have permanent clients – for all Tasmanian advocacy services except Citizen Advocacy this is not the case. In the case of Citizen Advocacy, the citizen advocate and the person with disability have an ongoing relationship.
However, some people have complex issues which can take a long time to resolve, while others are familiar with using advocates to help them and do so regularly – both of which can give the impression that some people have ongoing advocacy support.
Although some people who have profound disability are not able to verbally express their wishes to their advocate, many are able to indicate whether they are satisfied or dissatisfied with a situation through non-verbal communication. However, people who have profound disability rely more than anyone on other people to identify their issues and make a referral to an advocate. People who can make a referral to an advocate include a family member, friends or support staff.
Advocates will also initiate a referral themselves, on behalf of a person, if they become aware of an issue that requires advocacy. This can occur through chance contact with a person while working on behalf of another person (e.g. a housemate or work colleague). Issues may also be identified through group discussions (e.g. house meetings or workers’ rights meetings).
Much work on behalf of people who have a profound disability also occurs through systemic advocacy – where advocacy services are working to improve a situation affecting a group of people with disability (e.g. identification of poor medication practices; development of abuse guidelines; advocating for improved evaluation and monitoring systems).
There are a range of situations where an advocate’s work involves family members and carers. The situations described below relate to advocacy services working with families and carers of adults with disability.
Some situations involve a person with a disability who cannot direct an advocate.
Often, family members are the ones who contact advocacy services to raise their concerns on behalf of the person with disability, and to seek advocacy assistance. The advocate can proceed in two ways.
A man with a severe acquired brain injury has recently returned to his parent’s home as his family are willing to provide the care and support that he needs. They successfully apply for an Individual Support Package through the Gateway Service but feel overwhelmed with the requirements of setting up the support arrangements and contact an advocacy agency for assistance.
Some situations involve a person with disability who can direct the advocate, at least to some degree and the family is actively involved and seeking the same outcome. In such instances the person with disability and family are in agreement.
The advocate’s role is:
An uncle of a family has a moderate intellectual disability and lives in a shared home. He has indicated to his family that he is unhappy with where he is living and would like to move because another resident is picking on him all the time. Even though the family have reported their concerns to management nothing seems to have been done to address their concerns. The family and their uncle both want something done about the situation; however the family does not feel confident about tackling the organisation about the issue on their own and contacts an advocacy service.
Some situations involve a person with a disability and family members who are not in agreement. In such instances the advocate's role is to represent the person with a disability.
A 25 year old woman with a moderate intellectual disability lives at home with her parents. She is unhappy that her parents take care of her money and don’t give her enough to spend. She has broached the subject once with them but to no avail. She does not feel able to pursue the matter with them again.
Another common scenario is where family members are divided on what should happen for a person with disability who typically is unable to express a view. In these cases the advocate endeavours to establish what is in the best interests of the person and advocate for this to occur. If the rights issues are clear (e.g. the person is being abused) this is possible. Where there is a dispute within a family about major issues in the person’s life (for example, where they should live) it may be necessary to apply to the GAB for a formal substitute decision-maker to be appointed to resolve that dispute.
While Speak Out and Advocacy Tasmania work to some extent with children with disability – usually in relation to the child and their family accessing and using services (e.g. respite) – it is the Association for Children with Disability (ACD) who work specifically with young people.
ACD advocates seek to assist parents/carers to meet the needs of their children. In order to do so ACD needs the consent of the guardian, be that verbal or written. An ACD advocate cannot work with a child without this consent.
In the course of their work ACD advocates will also consider the needs of the family they are involved with, as commonly issues such as respite for the parents or support for siblings can affect the family’s capacity to support the child with disability.
Child Protection Services are responsible for the development of the case and care plan for a child with disability on care and protection orders. Advocacy services that are directly involved with a parent who is a client of a funded disability service should be involved in the case and care planning process for their child in care. This could also include transition planning for children leaving care after they turn 18 years of age.
Where possible, a parent/carer with disability should be supported by an advocate or a disability key worker during formal discussions about their child’s future. Advocacy support for the parent in that situation could also be to assist the parent to raise complaints or concerns about their child’s care, to speak on the parents behalf if requested, or to support the parent with self advocacy.
In the situation where an advocate is involved with a child in the care of a funded service, and is advised that there has been an incident with the child, the advocate is required to work with Child Protection Services as the legal guardian for the child, not work directly with the funded service. The Secretary of the Department is the guardian for children in care until they turn 18 years of age but can delegate this function to Child Protection Services. Formal guardianship is obtained through the Magistrate (Family) Court.
In all cases advocates have a duty of care to not cause significant harm or disadvantage to people or other people. Whilst, as previously stated, the advocate’s role is to carry out the wishes of the person, be that the person with disability, or their family they retain a responsibility to ensure their involvement will not result in harm or disadvantage to/for the individual for whom they are advocating or other persons in their group. However, the duty of care principle means that advocates must always be weighing up whether what they are being asked to advocate will cause significant harm or disadvantage to the person or others in the person’s group (i.e. other people with disability).
There are key differences between the role of the advocate and the role of a guardian. A guardian is someone legally appointed by the GAB, or appointed under an instrument of enduring guardianship. Depending on the situation, a guardian has the power to make decisions/provide consent for a range of issues (e.g. medical treatment, accommodation, lifestyle issues) on behalf of an adult who is unable to do so for themselves.
It is important that disability funded service providers are required to notify the person’s guardian if there has been an incident with the person, or to consult with a guardian before making any major changes to accommodation or health care. A guardian must make a decision taking into account the person’s wishes wherever possible, their best interests and their freedom of decision and action. A guardian is also expected to advocate on behalf of the person. The Public Guardian is also expected to undertake a systemic advocacy on behalf of people with disability.
As previously mentioned, advocacy is about standing with, and sometimes speaking for, a person to ensure their rights are recognised and respected. An advocate can be a friend, a family member, or someone from an advocacy service. Authority for the advocate to act comes from a request from the person. Decisions to act are therefore made by the person (Disability Action Inc, 1997 (2)).
The primary difference between a guardian and an advocate is that a guardian is a substitute decision- maker whereas an advocate does not make decisions on behalf of the person.
Situations can arise where a person who has a guardian will request the services of an advocate. The person may need assistance in expressing their wishes to the guardian. An advocate also has a role in making sure that the guardian remains accountable for the decisions they make on the represented person’s behalf. In many cases guardianship orders are limited to one area of a person’s life (e.g. accommodation) and this means an advocate can represent the views of a person in other areas of their life.
A young man who has a profound intellectual disability has been living in a shared home for six months. He appears to have settled into his new accommodation; however some members of his family want him to return to the family home to live with them. Other family members strongly oppose this idea and believe he should stay living in the shared home.Roles
A woman with a moderate intellectual disability has had the Public Guardian appointed to make decisions on her behalf about her accommodation. She has recently become dissatisfied with her community access program and wishes to move to a different service. She has been told that there are no places available in another service.Roles
Advocates work at the direction of the person. Their role is not to conduct an investigation about the circumstances surrounding the person’s complaint but to support the person through the process of making a complaint and any subsequent investigation that takes place.
When it comes to following a grievance procedure the advocate will discuss possible options and their likely outcomes with the individual. Although advocacy services encourage the person to use existing grievance processes it is ultimately the person’s decision about how they wish to proceed. Where the individual is dissatisfied with the outcome or process or the situation remains unresolved, they may wish to contact a higher authority.
A person with an acquired brain injury tells an advocate that she has been verbally abused by a member of staff whilst attending a day program. She wishes to complain.
A young woman with an intellectual disability who lives in a shared home reports that she has been sexually assaulted by a member of staff.
As part of the reforms that have been implemented across the disability sector over the past three years, Gateway Services have been established to provide a single access point for information and support for people with disability. The Gateway Service is the intake and access point for people to access specialist disability services.
The role of the Gateway Service is also to provide short term crisis response if required as outlined in the Disability Gateway Brokerage Funding Guidelines and collect data for future planning of services.
The Gateway Service provides information and advice to individuals and services about both generic and specialist disability services within their local area. This occurs through a tiered approach.
When a person contacts The Gateway Service an initial screening assessment is completed. This helps the Gateway Service to determine what kind of response or service is required to meet their needs. A single session response to someone in immediate need can also be provided at this stage.
The initial screening may show that a person would benefit from specialist disability services. This is when the Targeted Assessment for Disability would be completed to gather more detailed information about the individual, from themselves, family/carers and other previous assessments. The tool also determines eligibility for specialist disability services as outlined in the Disability Services Act 2011.
The Targeted Disability Assessment is used to refer the individual to the appropriate services to meet their needs.
The role of active monitoring is to work with people with a disability and their families in a range of ways. This includes:
Local Area Coordination (LAC) coordinates services for people who access the Gateway Service if needed. This includes:
LAC focuses on supporting individuals who are living in their community who receive minimal support from the specialist disability service system.
The Gateway Service coordinates services and assists in transitioning for people living in the community through LAC and Active Monitoring.
Gateway and advocacy services work together in the following situations:
Advocates on the other hand should be concerned with gaining empowerment and justice for individuals. Their role is neither to assess needs nor to plan services. This is the role of the Gateway Service.
In a situation where there is conflict, advocates take a clear position on the side of the individual and are there to assist the person to present their views, either by supporting the person to speak up for themselves or by representing the person’s views to the other parties. The role of the advocate in this situation is to assist the person to exercise their right to have their case heard.
An advocate has been working with a young woman for a number of years, who up until now has been living with her parents. The young woman who has an intellectual disability is in her early 20’s and has indicated to her advocate that she would like to move out into a unit by herself, but she would need some support with budgeting, meal preparation and transport training to get to and from her community access placement if she moves out of her current home. The advocate explains the role of the Gateway Service and the person asks her to make a referral on her behalf.
A local area coordinator has made extensive efforts to progress a Housing Tasmania application for a person on their case load, in urgent need of accommodation without success. The local area coordinator believes that the consumer has not been treated in an equitable way.
This booklet has been produced to help clarify the ways that advocates perform their role in supporting and protecting the rights of people with disability. Advocates often work in situations that are complex and where there are a number of interested parties involved. No two situations are exactly the same. The hypothetical scenarios which have been used in this booklet are therefore not intended to be followed prescriptively, and should only be used as a guide when seeking to clarify the role of advocates in real life situations.
This booklet will be reviewed in August 2014.
Suite 6, Mayfair Shopping Plaza, 236-244 Sandy Bay Road, Sandy Bay 7005
03 6224 2240
1800 005 131 (person free call only)
107/207 Charles St, Launceston 7250
77 Best Street, Devonport 7310
For Family Advocacy inquiries and/or assistance state-wide please call:
Association for Children with Disability (Tas.) Inc.
Comprises the 63 telephone code area – North East Region of Tasmania.
State-wide number 1800 171 233
Level 1, 8 Boland Street, Launceston
Ground Floow, 175 Collins Street, South Hobart
56-58 Oldaker Street, Devonport
Suite 1/40 Cattley Street, Burnie
Level 1/10 Bayfield Street, Rosny