Advocate Associates. Supporting Citizen Advocates To Support Vulnerable People With Intellectual Disability

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1 Supporting Advocates To Support Vulnerable People With Intellectual Disability Prepared by Advocacy South Australia Inc. Unit 1/76 Sturt Street, ADELAIDE SA PO Box 6804 Halifax Street, ADELAIDE SA 5000 P F E office.citizenadvocacy@gmail.com Funded by the Australian Government through the Department of Families, Housing, Community Services and Indigenous Affairs Revised May 2013

2 What is an Advocate Associate? are volunteers to the Advocacy Program who possess skills and knowledge useful to Advocates and people with intellectual disability. From time to time, an Advocate Associate can offer advice and perspective on matters as technical dimensions of the services which a person with intellectual disability receives or seeks to receive, strategy development for management of a demanding situation, or advice on technical matters that have relevance to the relationships (e.g., advice on managing as issue related to guardianship of property). A sufficient number of active provides a safeguard against Advocacy staff being drawn into individual advocacy activities, and provides a major support to Advocates and their Protégés who chose to avail themselves of their counsel. Advocate Associates should be respectful of the Advocates role in the relationship, and should avoid supplanting efforts the Advocate is willing to make. The Advocacy office recruits, orientates and actively utilizes a number of who represent a variety of technical skills. Further, Advocacy staff actively link Advocates to Advocate Associates as necessary. Advocates are therefore informed of the availability of, the skills they possess, and how to gain access to them. (Source: Standards for Advocacy Program Evaluation (CAPE) 1978, O Brien, J. & Wolfensberger, W. P.35) What is asked of an Advocate Associate? The time and level of commitment needed from an Advocate Associate will vary, depending on the needs and situations facing Protégés at any given time. It is therefore important that not become complacent and forget the importance of their role. In order to prevent this from happening, the Advocacy Program may hold evenings specifically for where they can continue their own learning about Advocacy; may be invited to talk to a group of Advocates at an Advocate Evening organised by the Program and, of course, are asked to respond quickly when their counsel is sort by a Advocate. In this way, will continue to feel very much a part of the Advocacy Program and an integral part of the overall effectiveness of the support available to all Advocates. In order for to be most effective, the following are expected: Participation in an Advocate Associate Orientation Program. This will ensure that all are clear about their role 2

3 and will prevent the possibility of jeopardising the independence of any Advocate when offering support. Meet with other from time to time. In this way people can learn from the experiences of others. Take advantage of opportunities to meet other people associated with the Program, i.e. Advocate Evenings, Annual General Meeting etc. For many Advocates, meeting in person helps them to feel more comfortable to contact you. Be open to the possibility of being a Guest Speaker at an Advocate Evening. Some have already presented at these informal gatherings and have been very well received by the Advocates who attended. Be available and act promptly when called upon. Remember that if a Advocate contacts you, chances are that they really do need your support and advice at that time. Be prepared to share your expertise. Be available for involvement in Advocacy evaluations, commonly referred to as Standards for Advocacy Program Evaluation (CAPE). If your circumstances change, notify the Advocacy office. are not: Involved in a Advocacy relationship themselves. Asked to take the place of any one Advocate around specific issues, or take on a Advocate s role in their relationship Definition of Advocacy (As adopted in 2007 by the Australian Advocacy Coalition) Advocacy is a means to promote, protect and defend the welfare and interests of, and justice for, individuals who are impaired in competence, or diminished in status, or seriously physically or socially isolated, through one-to-one (or near one-to-one) unpaid, voluntary commitments made to them by persons of relevant competencies. Some of these commitments may last for life. Advocates strive to represent the interests of the person as if they were the advocate s own; therefore, the Advocates must be sufficiently free from conflicts of interest. Advocates are supported and usually recruited by a Advocacy office with paid staff that is funded and governed so as to be essentially free from conflicts of interest. In consultation with the Advocacy office, Advocates choose from amongst a wide range of functions and roles. 3

4 Characteristics of Advocacy Established History Responding to the calls of families who were asking, What happens to my child with disability when I am gone? at the United Cerebral Palsy Association Conference in 1966, Dr Wolf Wolfensberger (cofounder of Advocacy) took the best elements presented to draft what would become known in 1968 as Advocacy. The first Program started in Lincoln Nebraska in By 1972, following a Presidential commendation and Federal grant money, over 200 Programs opened in the USA alone. In 1975, drawing on the experiences, successes and failings of Programs, Dr Wolfensberger and John O Brien wrote the Standards for Advocacy Program Evaluation (commonly referred to as CAPE) as the yardstick by which to gauge the quality of Advocacy practice. Advocacy started in Australia in the early 1980 s with Advocacy South Australia becoming incorporated in The Program is funded by the Commonwealth Department of Families, Housing, Community Services and Indigenous Affairs. Grassroots Movement Advocacy draws on the expertise of community-minded people through a small but carefully considered process of networking and directly from the concerns and issues of people with intellectual disability. Structured Evaluation The effectiveness of Advocacy Programs is measured against criteria specified in CAPE. Documented Framework Based on the CAPE evaluation tool an annual plan is documented as a guide to our work. One to One Relationships Advocacy is a mutually agreed-to partnership between a person with intellectual disability and someone who, having the necessary skills and characteristics, freely assists in meeting some of that person s needs. Long Term Commitment Advocacy asks prospective advocates to consider involvement over the longer term and not something to fill time until something else comes up. 4

5 No Payment/Compensation The relationship between a Advocate and Protégé involves no payment of any kind. Payments would not only change the relationship into a service-relationship but also create conflict-ofinterest issues. None reliance on referrals Advocacy staff do not rely on referrals from human services but actively seek out vulnerable people with intellectual disability in need of advocacy support. Staff are not Advocates Advocacy coordinators are required to recruit, orientate, match and support advocacy relationships. Staff cannot themselves be advocates as this would undermine the relationships supported. Managed by Local People Local people committed to Advocacy manage the Program through their active involvement in it. Some Fundamental Assumptions of Advocacy All people have equal value and are worthy of dignity and respect. All people have potential and are capable of growth. All people should have opportunities to share in the freedom, choices and quality of life generally available to ordinary citizens. People who are devalued are more vulnerable. People who are devalued are generally given a raw deal and ought to have better. Concerted efforts must be made to ensure devalued people have opportunities for a good life. Devaluation is a societal problem that can be addressed at a number of levels. One way is through the personal action and commitment of ordinary citizens. 5

6 Advocacy Principles Advocate Independence [Loyalty to Protégés] Advocates do not work for the Program and are free to manage their relationship as they see fit, be involved with the Protégé whenever and in whatever context they believe appropriate to the benefit of the Protégé. The independence of the Advocate minimises conflict of interest therefore enabling genuine loyalty to Protégé and their needs without compromise. Program Independence In order to support Advocate Independence the Advocacy Program must be independent also. This means not co-locating or having any shared governance with any services that are involved with people with disability. Staff are therefore free to support Advocates. Clarity of Staff Function Advocacy roles are clearly defined and Advocacy staff are not advocates themselves. Positive Image of People with Intellectual Disability In everything concerning people with disability, how we talk to and about people, how we introduce people to each other, our office, décor, staff and printed material, Advocacy promotes people with disability in a positive way. Advocates understand this and are encouraged to regard and promote their Protégés in positive ways also. Long Term Relationships The stream of people that come and go throughout the lives of most people with disability, in what we refer to as the relationship circus, is destructive. Advocacy aims to counter that destructiveness by establishing long term, even life-long relationships. Balanced Orientation to Protégé Needs Diversity is strength in Advocacy. Therefore we seek to be involved with a variety of people with intellectual disability who vary in age, severity of disability, lifestyles, living situations, reciprocity, circumstances and locations. Diversity of Advocacy Roles As every individual s situation is uniquely their own and so too their needs, there is great diversity in the roles Advocates may take. 6

7 Balance of Current and Planned Advocacy Relationships Regular reviews are conducted to ensure that the Program maintains a diversity in the relationships sought and supported. Availability of Crisis Advocates People with intellectual disability may be in crisis when we meet them and intervention is needed immediately. As staff cannot be advocates themselves, standby Crisis Advocates are recruited and oriented to be ready for such situations. Definition of Protégé In Advocacy the term protégé is used to refer to the person with intellectual disability for whom Advocacy is intended. The term originates from Latin ( protegére ) and French protéger meaning to protect. (The Macquarie Encyclopedic Dictionary, Macquarie University, NSW, Australia, Reprinted 1992) Protégé is not used in general situations where the person s name, friend or other terms would be more socially appropriate. Some examples of Advocate Roles Spokesperson Mentor Facilitator Listener Link to services / community Interpreter Role model Friend Teacher Confidante Informer Advocacy Is Not A traditional volunteer program Advocates are recruited, oriented, matched and supported with one person in a flexible freely given arrangement, managed by the Advocate and Protégé. Advocates are not required to report, nor are they reimbursed or readily replaced. Support to Advocates is as required and not restricted to office hours. A welfare or charity service Although material welfare and charity are important this too is not the primary goal of Advocacy. Advocacy is about social justice for people who are most vulnerable in our society. About building better communities 7

8 No doubt communities improve with greater diversity and involvement of people with disability. None-the-less this also is not the primary goal of Advocacy but may be another positive result. Some Common Struggles for Not receiving contact from Advocates for long periods Not feeling useful to Advocates or the Program Being contacted at an inconvenient time Feeling pressured to know all the answers Keeping involvement specific to the issue at hand The role of an Advocate Associate is purely a supportive one on an as needs basis. It is an important part of the overall support available to all Advocates and something unique to Advocacy. Most people will generally only make use of when they have exhausted their own resources. With that in mind, understand that if a Advocate contacts you, be sure s/he needs your support. 8

9 Some Examples of Scenarios Prompting Advocate Associate Involvement Protégé Situation Suspected over use of medication on a Protégé A Protégé is considered ineligible for a particular service Protégé has a fall & opinions differ re: treatment Protégé appears to have lost money / financial abuse is suspected A Protégé is give a rare diagnosis A Protégé is assaulted Advocate Action Ascertain what is being administered, by whom & why Find out when the decision was made, by whom and why Find out what has happened & any injuries incurred Learn who has control over the Protégés finances / what costs the Protégé incurs etc Understand the significance / implications on the Protégé Find out what could be done to minimise the likelihood of another assault Advocate Associate Involvement Provide information re: common practise / any healthier alternatives Inform the Advocate on standard practice i.e. what should happen Inform Advocate on treatment options & implications Advise Advocate on the path of least resistance & what to expect if the situation is normal Source the latest information of the condition / advise where the best information could be found Discussion with the Advocate about possible strategies / may involve a meeting with the Protégé & Advocate Desired Outcome Advocate able to speak with the Protégés doctor with some confidence The Protégé gets the service they need The Protégé receives the most appropriate treatment available Advocate has a comparison between what is considered the norm & what the Protégé had Advocate has a good understanding of the condition & the kind of support one should expect to need Greater protection for the Protégé / greater awareness of the risks Resulting Advocate Role Challenge the use and/or type of medication being used or support it s continued use if appropriate Promotes the needs of the Protégé and the service that best addresses the need The Protégé gets what will met their individual need Seek legal advice if the suspicion is found to be true or support the current arrangement Defend the Protégés need to receive ongoing individualised support Educate the Protégé about the dangers / strategies to minimise risk 9

10 Advocacy South Australia Inc Asks To Be open to further orientation about Advocacy Be available & act promptly when called upon Share your knowledge and expertise Take advantage of opportunities to meet others associated with the Program from time to time Be open to the possibility of being a Guest Speaker Let us know if your situation / details change Be available for CAPE and other forms of evaluation concerning Advocacy 10