Maxine Drake
Other
Maxine Drake
Independent community advocate
Submission to the DSS review of the National Disability Advocacy Program
(Comments are generally framed in terms of the areas identified in the submission template)
Advocacy models and access
The current models of disability advocacy listed; individual advocacy, systemic advocacy, citizen advocacy, family advocacy, self-advocacy and legal advocacy, have evolved and become defined by the people who are drawn to them to achieve objectives for change or support. Each model makes inherent sense to those people that they serve. Equally, in civil society, they serve the same purpose of maintaining a mechanism for justice and human rights protections for citizens in moments of need.
The question of how people access any of these options, regardless of where they live or their individual needs can be addressed through a number of strategies. Communities of Advocacy Practice need to be fostered through capacity support so that individuals and agencies that carry out advocacy work can engage across their ‘model’ boundaries and develop strong networks where services can refer or work in partnership with other advocacy services. Due to the relatively recent development as advocacy as a human service profession, the usual systems of building a discipline through courses of study, teaching programs etc, have not existed. As such, systems of practice monitoring, standardisation, accountability and best practice development are yet to be established. In the interests of service users and the funders, additional investment is needed into advocacy as a human service activity in order to systematically define and refine the practice of advocacy and what constitutes good advocacy.
Technology provides an array of means for people remote from service centres to access good assistance with their service negotiation challenges or issues of dispute or redress. Capacity for advocates to travel to areas of need, to undertake ‘clinics’ in local services, also provide a way to extend the reach of city based services and open the minds of advocates to issues faced by people with disabilities and their families living in regional areas.
Systemic advocacy
No organisation should be a systemic OR individual advocacy provider. All advocacy services need to be required to engage in both systemic and individual advocacy. Individual advocacy services that deal with one issue at a time and never aggregates issues and identify themes is failing their constituents because they are contributing nothing additional to the civic effort to improve community life. Systemic advocacy agencies that do not inform themselves of issues through active involvement in advocacy at a human level risk lacking the authority and integrity to speak on behalf of a constituency. Varied models of systemic advocacy will evolve through the influences of memberships and leaders and this is a healthy dynamic to encourage in the community sector. The historical fragility of advocacy as an activity, due to the fact that many such organisations seem to ‘bite the hand that feeds them’, places advocacy in a precarious position in the civic domain. Some agencies conduct individual advocacy despite this not being within the terms of their contract, due to the pressing need to represent the lived experiences of their constituent members.
Federated representative associations (peak bodies) form a natural system for the capturing of trends and identification of human rights and service access issues within the disability services sector. Identification of the network of advocacy services within the community disability sector can enable the targeted enabling of data collection and trend mapping.
Conflict of interest
True independence of advocacy services from service provision is the best safeguard against conflicts of interest. Truly independent advocacy is an absolute necessity in the new environment of the NDIS where traditional not-for-profits are corporatising, altering Constitutions to enable different service mixes and widening eligibility beyond their historical constituencies. New and re-cast enterprises that are delivering services in alignment with the NDIS can no longer be regarded as consumer organisations able to provide advocacy that has independence. As such, truly independent agencies need to be fostered that can provide the robust assistance needed by families negotiating life-changing supports and services.
Interfaces with NDIS
The existing Local Area Coordination structure in Western Australia that provided some level of advocacy support to families and individuals with disability had been appropriated into the NDIS in this early phase of the roll out. The implications for this will be revealed with time, however it is clear that this leaves the community without this resource. The once-named LAC’s and new My Way Coordinators are now tasked with negotiating plans and services which is directly in conflict with advocacy. They may advocate internally within their system, speaking up for families within the new system, but this has severe structural limitations. Families having difficulties will now naturally seek out independent advocates to help in these planning processes where they once may not have felt the need to do so. Truly independent advocacy services are a vital accountability check on the new arrangements, flagging issues earlier than would otherwise occur and minimising the escalation of issues into political and legal domains.
Governance arrangements
No service provider agency should be funded to deliver advocacy through the public purse. All service provider organisations need to meet standards relating to complaints management, incident reporting and related protections for their service users. The entitlement to independent advocacy exists in the context of Natural Justice as a right of all people to challenge decisions with assistance that addresses inherent power imbalances faced by people with disabilities and their families.
People not in the scope of the NDIS needing advocacy
The NDIS is established to meet the support needs of 460,000 Australians with significant disabilities, against clear criteria. Many more Australians live with disabilities who will never qualify for services through NDIS arrangements. Advocacy services provide a real-time mechanism for identifying the impact of the roll out of the NDIS on people who need services through state-based, state funded arrangements. It does not make sense to set up parallel advocacy services for NDIS and state funded disability service consumers. Advocacy services need to be available to both cohorts regardless of where the funding flows from.
Access to justice
People with disability are profoundly disadvantaged within the legal system for many obvious reasons. Advocates are generally not well-equipped to provide support in legal settings beyond independent third party support. Access to funded legal advice and representation is the best safeguard, particularly in areas of need that are not covered by community law centres. Supported Decision Making for people with disabilities is a new community standard that must be promoted through funding contracts. Historically, people with disabilities with any degree of decision making difficulty could face wholesale removal of their autonomy through plenary guardianship and administration orders. The use of limited orders is increasing but the new standard that consumers seek is skilled support to enable maximum autonomy in life decisions, through Supported Decision Making.
Maxine Drake
Perth, Western Australia
1 June 2016