Welcome to the October 2005 Care & Support Portfolio e-newsletter.

In this issue:

1. Care & Support Working Group meets
2. Care & Support in the 5th National HIV/AIDS Strategy
3. Working Group priorities reflected through reach and representation of members
4. Capturing the complex experience of HIV/AIDS
5. PLWH/A and Workforce Participation
6. Disability and Participation Alliance meeting
7. Human Rights and Equal Opportunity Commission
8. Centrelink
9. Department of Employment and Workplace Relations
10. Insurance
11. ACOSS
12. About this newsletter

1. Care & Support Working Group meets

The first NAPWA Care & Support Working group face-to-face meeting was held in Sydney on 19th August and allowed members to have in depth discussions on issues, strategize and prioritise actions.

Structure

The Care & Support Portfolio is one of 8 national portfolios of the NAWPA Board.

The Care & Support Working Group is the primary focal point for the progression of advocacy and policy issues identified in the work plan of the Portfolio in pursuing the goals and strategies identified in NAPWA’s Strategic Plan.

What follows is a summary of the issues discussed at the Working Group meeting:

Membership

Rob Lake, Care and Support Convenor, NAPWA
Graham Douglas-Meyer, WA representative
Derek Hooper, Queensland representative
David Wallace, Bobby Goldsmith Foundation
Glenn Flanagan, PLWH/A (NSW)
Ian Rankin, ACT representative
Gabe McCarthy, NAPWA President
David Menadue, NAPWA Vice-president and past Convenor
John Rule, Manager HIV Living and International Unit, NAPWA
Peter Canavan, HIV Living Program Coordinator, NAPWA
Scott Lockhart, National Portfolio Coordinator, NAPWA

The group briefly discussed membership and considered the role of Positive Living Centre (PLC) reps within the network. The meeting agreed that it would be useful to look at moving toward co-opting representation from the NAPWA women’s and indigenous networks, as well as seeking an appropriate multicultural representative.

2. Care & Support in the 5th National HIV/AIDS Strategy: Revitalising Australia’s Response 2005-2008

Gabe provided a brief context on the drafting of Care & Support chapter of the current 5th National Strategy (Chapter 5.3 Responding to the changing care & support needs) and acknowledged David Menadue’s involvement in that process and the work of the secretariat and the working group members.

Gabe commented on the focused thinking now informing the care & support section of the 5NS which sought to acknowledge the importance of holistic care, the role and interface of primary and enhanced care, the relationship with mainstream services (esp. mental health and housing) and the medicalised response informing and challenging HIV Care & Support services.

Members of the group were invited to provide input into the 5NS Draft Implementation Plan and developed recommended amendments to the document for tabling at the next round of Implementation plan discussions with the Commonwealth, particularly around Care & Support issues and themes.

3. Working Group priorities reflected through reach and representation of members

Rob believes that NAPWA’s membership on a number of National working groups, in particular the Department of Workplace Relations (DEWR), Centrelink’s DisAbility Customer Service Reference Group and the Australian Federation of Disability Organisations (AFDO) ensures that NAPWA representations are currently strong and effective.

Currently, representatives are providing input into issues related to “flexible work places” and “ongoing supports” (HREOC) and “workforce capacity” (DEWR).

Rob talked over some of the politics around NAPWA’s representation on the Centrelink Reference Group and stated that NAPWA’s ongoing involvement is strategically important. The group operates within a service provision rather than a policy framework.

Representative positions

• AFDO – Graham Douglas
• Centrelink Disability Customer Service Reference Group – Rob Lake
• DEWR – Rob Lake
• HREOC – Rob Lake to attend September Forums

4. Capturing the complex experience of HIV/AIDS

Ian discussed the merits of the Care &Support network developing a matrix and ‘description’ of the HIV positive population base – a description that would include the complex experience of HIV/AIDS across the community. This could be framed as or include specific position papers focused on issues which assist in further describing the complexities of the population, including the importance of capturing projections to inform future needs and strategies for services. The meeting agreed that this would be strategically and politically valuable and agreed to pursue this as a strategy.

David W provided a background to his experiences with PLWH/A and returning to work and acknowledged the complexity of experience. Glenn identified increased support needs evident in his work environment.

Glenn shared an example of what was described as ‘pre-emptive rehabilitation’ where a client’s DSP was cut on the assumption that rehabilitation – into the future – would see that client being ‘work ready’ and so the determination was made to cut the DSP immediately. This exposed a development with Centrelink’s engagement with welfare reform and there was strong encouragement that the case be documented as a case history.

The Secretariat agreed to investigate the feasibility of capturing plwha return to work experiences through the NAPWA website.

The meeting discussed the merits of developing a fact sheet on DSP assessment support issues including tips on ‘surviving’ Centrelink DSP assessment processes, with the possibility that this be presented at the NAPWA conference in Adelaide – November 2005.

(Note: Subsequently, PLWHA NSW and BGF are producing a fact sheet to assist clients negotiate recent assessment changes.)

5. PLWH/A and Workforce Participation

Scott presented his National Centre in HIV Social Research (NCHSR) Practicum research presentation, and members discussed the implications of the data in relation to current welfare reform.

Members agreed that Scott’s presentation was valuable and that the research data should be posted to the NAPWA website.

Members then discussed a range of issues impacting and influencing workplace participation for plwhas and some strategies to address these.

6. Disability and Participation Alliance meeting

David M spoke to the Disability and Participation Alliance meeting in Canberra on 23 June and relayed his frustrations with the level of engagement and commitment from the government to the concerns of NAPWA. He advised the meeting of a lobbying meeting to take place in September 2005.

Ongoing strategies in relation to the impending welfare reform and DSP changes were discussed and members reiterated that further development of the data from the previous presentation would be useful for lobbying purposes and agreed that a lobbying package should be developed to assist.

Comprehensive Work Capacity Assessment

One concern that David highlighted from the Disability and Participation Alliance meeting was in relation to Workability Assessments - which were being framed by APM and HSA - and in seeking commitments from Centrelink for the inclusion of plwhas in the training of APM and HSA Assessment Officers on issues particular to the needs of plwhas. Members felt that the option of bringing a DDA legal case against APM or HSA should be explored as the level of commitment to concerns, raised repeatedly by NAPWA representatives, continue to be ignored.

David W attended a meeting with DHS & DEWR on 12th August to discus the merits of forming an alliance with Mental Health Peaks as there was general agreement that psychological issues continue to impact on return-to-work issues and that such alliances may strengthen the lobbying process. Also, that some of the work done on ‘family friendly workplaces’ may provide some background to NAPWA representations.

7. Human Rights and Equal Opportunity Commission

John confirmed NAPWA’s commitment to the Human Rights and Equal Opportunity Commission (HREOC) and informed the meeting of several working groups to take place across the country with the first meeting to take place - 14 September.

The two working groups which were of particular interest to NAPWA were to focus on:

• “ Ongoing supports” - developing and improving the system for providing on the job supports for people with disability, and their employers; and
• “ Flexible workplaces” – considering the types of flexibilities that an employee with disability might need to work effectively.

(Rob attended these workshops and has reported that the two groups are developing feedback models by 7th October for HREOC consideration on both issues)

8. Centrelink

Ian attended the Centrelink Disability Customer Reference Group meeting in Canberra on 15th and 16th September. The focus of this group is on “service delivery” as DEWR determines policy and funds Centrelink to deliver services.

This split in responsibilities between service delivery and policy make it a real possibility that sensitive decision making which takes into account a persons full circumstances before income support suspensions are made, could be compromised by tough policies separated from the experience of practice.

The meeting considered a range of issues affecting Centrelink service delivery in response to the Government’s new welfare to work policy and initiatives. Some of the concerns from the meeting were in relation to:

• Lack of understanding from Centrelink on how to deal appropriately with episodic illness and fluctuating work capacity to arrive at measure ensuring people would not experience adverse income support outcomes.
• Lack of opportunity for training input to private CWCA providers to ensure that assessors have an appropriate level of understanding of HIV/AIDS and some other conditions, with the outcome that plwhas are likely to experience differing outcomes depending on which CWCA provider they attend.

There will be different levels of supports for DSP applicants during the transition phases of the government’s welfare reform package, which will likely lead to individuals in the same disability group having very different income support entitlements and obligations. All of this will make it confusing and challenging for service providers to manage, given income responsibilities will vary dependent upon whether the person receiving DSP support is a current recipient (on DSP before 11/05/05), an interim DSP recipient (DSP granted or cancelled and re granted after 11/05/05) or new incoming DSP recipients.

New arrangements will provide entry to a raft of new service providers with access to information on individuals’ disability, possibly leading to ‘forced disclosure of HIV status’ beyond what is reasonable, as a consequence of the obligation for job seeking. Currently there is no enforceable duty for prospective employers to maintain the privacy of information provided by people seeking a job.

9. Department of Employment and Workplace Relations

A national consultation process is occurring at present seeking input into the Government’s plan to introduce Comprehensive Work Capacity Assessments (CWCA) in assessing the work capacity of people with disability applying for income support.

The government says that the CWCA will focus on assessing the impact of disability of a person’s ability to participate in society and is a move away from a medical understanding of disability.

Members agreed to participate in the consultation process and David W attended the consultation in Sydney with Graham D-M attending in Perth.

The Working Group discussed debating points to be raised at the DEWR meetings, these include:

• Building in evaluation process to workplace assessment procedures to be raised at DEWR meetings.
• Discuss appeal processes,
• Reminding DEWR of the existence and relevance of the 5th National HIV Strategy.
• AFDO ‘What to Look for” Position Paper to inform DEWR meetings.

The Working group then discussed the merits of developing a lobbying ‘package’ that would include:

• Employment data
• Personal stories
• Treatments side effects data
• Intermittent employment data
• ACOSS arguments re Newstart penalties as unsustainable for PLWH/A.
• Outline structural barriers that problematise return to work.
• Pre-employment support, in-work support to be included in paper.

Feedback from the consultations by our members include:

• Review mechanisms for DSP recipients.

It is unclear whether existing DSP holders will receive more frequent reviews as is the case with people eligible for DSP after May 11 2005, who will be reviewed between every two and five years.

What training will be provided for CWCA providers and will the assessment tool be a uniform one across the country. If so, what assessment tool will be used?

As CWCA is a “point in time” assessment, how will it take into account the episodic and complex nature of illnesses like HIV which will likely make it very difficult for plwhas to sustain 15 hours a week of work continuously; together with the new eligibility criteria for DSP which will in effect create a structural barrier to people being able to find and sustain work after 11 May 2005?

Concerns over consistency in CWCA service delivery if there are a growing number of private providers entering after the government’s commitment to two years of continuity as the major provider of CWCA expires.

Concerns that smaller job networks will be forced out of the market over time as Disability Open Employment Services (DOES) are subjected to DEWR outcomes and required to operate more like job networks. Funding arrangements will further potentially limit the choice for clients as the major DOES agencies (e.g. Salvation Army and Mission Australia) align to operate more like Job Networks.

Serious concern that for DSP clients who receive the DSP after 11 may 2005, who are encouraged to seek work over 15 hours a week, that they may be reviewed off the pension onto NewStart when they have a CWCA after 1 July 2006.

10. Insurance

Members discussed a range of insurance issues and recommended that NAPWA write to the Insurance Council of Australia Limited and to the Investment and Financial Services Association of Australia highlighting issues raised by the productivity commission review, particularly in relation to calculations around life expectancy used by the Insurance industry. Subsequently, the Care & Support and Legal Portfolios at Napwa agreed to work together to progress work in this area.

11. ACOSS

David M has strongly recommended that NAPWA provide a link to the ACOSS website where people can take action online in three quick steps and tell their member of parliament that they care about jobless people and the potential impact of the proposed welfare reform legislation.

12. About this newsletter

This newsletter is the result of a combined effort by the NAPWA Care & Support Network with ongoing plans for bi-monthly circulation through a sign-on email list (see below for sign-on details).

The Care & Support Network is facilitated by the NAPWA Care & Support Portfolio Convenor and comprises a broad mix of HIV sector workers and individuals that share an interest and commitment to HIV Care & Support issues – and do so from a variety of perspectives.

The Care & Support Network has for some time now, identified a need for consistent communications and greater monitoring of Care & Support issues. It is hoped that this newsletter will address this need whilst providing current information of interest to those working in, or associated with, aspects of Care & Support for plwha within the HIV sector and affected communities.

It is envisaged that the newsletter will stimulate discussion and foster feedback from a broader readership and that this will assist the Care & Support portfolio identify and respond to current Care & Support issues impacting upon people living with and affected by HIV/AIDS.

In an effort to ensure the Care & Support newsletter is user friendly, editions will generally comprise one or two pages only, in the form of a ‘digest’ with short introductions to relevant information, articles and updates, each providing a link to further information at associated websites.

Please forward this edition to interested persons and relevant organisations that may benefit from being part of the mail-out newsletter listing.
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