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Back to the Future: a feasibility study on return-to-work programming for people living with HIV/AIDS

by Ian Grubb and Craig McClure (Health Hounds) for the AIDS Committee of Toronto
http://www.actoronto.org/website/research.nsf/pages/back+to+the+future

Section 1: Executive Summary

1. Background

Since protease inhibitors became available in 1996, combination antiretroviral therapy has led to significant improvements in the health of many persons living with HIV/AIDS (PHAs). As these PHAs regain their health, AIDS Service Organisations (ASOs) are being required to respond to an emerging need for programs and services designed to assist those who want to return to the workforce. This need presents a significant challenge to the way ASOs have traditionally provided information, education and support.

2. Aims and Objectives

In 1997, the AIDS Committee of Toronto (ACT) commissioned this study with the objective of assessing:

• The return-to-work issues being experienced by PHAs
• The vocational rehabilitation services available at non-HIV/AIDS agencies
• The suitability of these programs to respond to the needs of PHAs and the potential for alliances/partnerships with these agencies
• What return-to-work programming has been established at ASOs elsewhere in Canada and in one or two major centres in the United States
• What documentation exists on return-to-work programs and issues for PHAs
• What government programs are available in this area and whether they are a potential source of partnership or funding.

The study also includes an assessment of:

• What types of return-to-work programming need to be established at ACT
• What partnerships should be pursued with other agencies that have existing vocational rehabilitation services and
• What sources of funding are available (including the potential for a pilot study).

3. Methodology

Between September and November 1997, ASOs were consulted in Toronto, elsewhere in Canada and in the United States. Existing Information about PHA needs and return-to-work programming was gathered and documented.

Consultations were also held with the Canadian insurance industry, federal and provincial government welfare, rehabilitation and benefits agencies, health care workers and community-based vocational rehabilitation services in Metro Toronto.

A PHA needs assessment was conducted using a self-administered questionnaire and facilitated focus group discussions at an action research forum in Toronto attended by 21 PHAs.

4. Findings

Numerous barriers to the effective reintegration of PHAs into the workforce were identified, particularly in relation to current income support programs, long term disability plans and psychosocial issues. However, significant opportunities exist for programs and partnerships aimed at overcoming these barriers.

Although the study primarily addresses issues for PHAs in Toronto, it contains information which may assist return-to-work planning by ASOs in other Canadian urban centres.

5. Recommendations

The study recommends a range of potential return-to-work strategies for ACT, including:

• Possible short-term programs and activities
• The development of a pilot study in vocational rehabilitation for PHAs in partnership with government and industry
• The expansion of current benefits advice services offered by ASOs in Toronto and the development of relevant education and information material
• HIV in the workplace information and education programs
• Other education and information strategies for PHAs, vocational rehabilitation agencies and the insurance industry.

Section 2: Project Overview

2.1 Background

Over the course of the HIV epidemic, retirement from the workforce, either due to illness or in order to preserve one's existing emotional and physical health, has become one of the many rites of passage for a person living with HIV or AIDS (PHA). HIV infection and its consequent assault upon the immune system have signalled for most PHAs the prospect of perhaps 10 years - though often less - of inexorable decline into illness and eventual death. AIDS service organisations (ASOs) have become adept at helping PHAs manage this transition into illness and disability. Until recently, few service providers or PHAs had expected that leaving work would be (for most) anything but a permanent state of affairs.

Since 1996, advances in monitoring HIV viral load and treating HIV infection have altered this prognosis for many - though not all - PHAs. However, it remains the case that these advances do not represent a cure for HIV infection. The benefits of combination therapy have not been experienced universally, the long-term efficacy of the new drugs remains unknown, the capacity to tolerate side effects varies widely between individuals and complex treatment regimens have added new challenges to the lifestyles of PHAs. The treatments which have improved the prognosis for many PHAs also come at great expense to the health care system.

It is in this uncertain climate that many PHAs are nonetheless daring to contemplate the prospect of living an extended or even "normal" lifespan, and pursuing life options which they may have thought lost to them. For some, this includes the possibility of returning to the workforce, either to previous occupations or professions or in entirely new fields. Other PHAs feel that improvements in their health, combined with a tightening of eligibility for social assistance or pressure from disability insurers, could make a return-to-work inevitable.

Many PHAs have been out of the workforce for a number of years and feel unsure about their ability to deal with the demands of the modern workforce. Equally, there is uncertainty and apprehension about the extent to which the work environment is sufficiently flexible to accommodate the needs of people living with a chronic illness, especially one which has been as stigmatised as HIV.

Beginning to think about the future again, and the possibility of returning to paid work, can be a frightening and confusing process for any person with a chronic illness. It is a process which involves weighing risks and taking leaps into the unknown. Without any assurance that improvements in health can be sustained, disability benefits have offered and continue to offer security of income for many PHAs, together with an assurance that the enormous cost of the new HIV treatments will continue to be met. But it is becoming clear that many people are now looking toward the future with more optimism and are entertaining options that until quite recently were unimaginable.

The challenge for many PHAs and those providing services to them now lies in translating the gains which have been made in physical well-being into a sustained capacity to envision and plan for the future. Thinking about and preparing for a possible return to work - however tentatively and regardless of whether a job is the eventual result - is just one way in which new visions of living with HIV might be attained.

2.2 Introduction

In the last 12 months, some ASOs have recognised the need to provide services aimed at assisting those of their clients who have benefited sufficiently from advances in treatment to think about returning to work. However, the provision of practical and emotional support about returning to work demands a significant mind-shift for organisations more accustomed to helping people leave the workforce and - in partnership with other health care providers - to deal with illness, grief and loss.

The AIDS Committee of Toronto (ACT) has recognised that HIV/AIDS is changing and that providing appropriate return-to-work services for its clients involves new challenges for the organisation. ACT - like other ASOs - is entering new terrain. To meet these challenges, it must enter partnerships with other service providers and communities and provide its clients with information and support which enables them to take control of their own lives. It is hoped that this feasibility study represents a preliminary step in that direction.

2.3 Aims and Objectives

This study was commissioned by ACT in July 1997 to make an assessment of the following issues:

1. The needs of PHAs regarding return-to-work issues.

2. The vocational rehabilitation programs available at non-HIV/AIDS agencies.

3. The suitability of these programs to respond to the needs of PHAs and the potential for alliances/partnerships with these agencies.

4. Return-to-work programming that has been established at ASOs elsewhere in Canada and in one or two major centres in the United States.

5. Existing documentation on return-to-work programs and issues for PHAs.

6. Government programs available in this area and their potential as sources of partnership or funding.

The project was also required to include recommendations regarding the design of return-to-work programming for PHAs at ACT, including:

1. What types of programming need to be established at ACT.

2. What partnerships should be pursued with other agencies that have existing vocational rehabilitation services, and

3. What sources of funding are available (including the potential for funding a pilot study).

2.4 Methodology

The following methods were employed during the course of the study and in the production of this report:

2.4.1 Literature Search

An extensive search was made of HIV-related websites and associated databases in North America and Europe. Further literature was obtained from the ACT library and in the course of discussions and consultations with individuals and ASOs in Canada and the United States. The literature obtained contains further extensive references to other work done in this area.

• An overview of the literature obtained appears in Section 3.
• An index of the literature obtained appears in Appendix C.
• A list of useful web sites appears in Appendix C.

2.4.2 Consultations

Within a 10-week period between mid-September and mid-November 1997, consultations were conducted with the following groups and organisations:

a. AIDS service organisations in Metro Toronto

Key informants from the following community-based ASOs in Metro Toronto were interviewed to assess their client/members' current thinking about return-to-work issues and their present or prospective need for vocational rehabilitation and employment-related services:

AIDS Committee of Toronto (ACT), Toronto PWA Foundation (TPWAF), Community AIDS Treatment Information Exchange (CATIE), Black Coalition for AIDS Prevention (BlackCAP), Asian Community AIDS Services (ACAS), Voices of Positive Women (Voices), Prisoners and AIDS Support Action Network (PASAN) and Africans in Partnership Against AIDS (APAA).

In most cases, the person interviewed was a support worker or other person having direct contact with PHAs who use the organisation's services. In the case of ACT and TPWAF, meetings were held with benefits counsellors and case managers. Where possible, interviews were conducted in person. Some interviews were conducted by telephone.

b. AIDS service organisations elsewhere in Canada

Telephone discussions were held with the Canadian AIDS Society (CAS), British Columbia Persons with AIDS Society (BCPWA) and MIEL Quebec about their work in this area. CAS provided valuable referrals to American ASOs.

c. AIDS service organisations in the United States

Telephone discussions were held with several ASOs in the United States. Referrals from these organisations to experienced individuals were also pursued. Where possible, relevant literature about their current return-to-work programming was obtained.

d. Insurance industry

Meetings were held with the Canadian Life and Health Insurance Association (CLHIA), Manulife Financial (the largest insurance company in Canada) and preliminary contact was made with Mutual Insurance. Several private benefit consultants provided input. The study consultants also attended a meeting of the Canadian Insurance Underwriters Association.

e. Social assistance agencies

Meetings or telephone discussions took place with individuals from Human Resources Development Canada (Canada Pension Plan (CPP) and Employment Insurance (EI)) and Ontario Family Benefits Allowance (FBA), General Welfare Assistance (GWA) and Vocational Rehabilitation Services (VRS).

f. Vocational rehabilitation (VR) service providers

The study consultants attended a meeting of community-based VR service agencies in Metro Toronto hosted by TPWAF in October 1997. Follow-up contacts were made with some of those organisations, while a number of others were consulted by telephone.

g. Health care workers

A meeting was held with staff at Sunnybrook Health Sciences Centre's HIV Outpatient Clinic to obtain a snapshot of the experiences of health care providers with return-to-work issues for PHAs.

• A full list of all individuals and organisations consulted, or who otherwise provided input into this project, appears in Appendix B.

2.4.3 Action Research Forum

A half-day action research forum held in late October 1997 was attended by 21 PHAs who were presently on disability and thinking about returning to work. The workshop consisted of three components:

a. An information session exploring issues likely to influence decision-making around returning to work.
The purpose of this session was to provide participants with information which might assist them to more fully consider their particular needs and concerns about returning to work.

Separate speakers addressed issues for those receiving disability benefits through a form of social assistance (FBA, CPP, and GWA), and issues for those receiving Long Term Disability (LTD) benefits through an employer, group or private plan. A third speaker discussed his own experiences as a PHA who had recently returned to the workforce.

b. Completion of needs assessment questionnaire.

c. Small focus groups to expand upon issues arising from the information session and in the questionnaire.

• The questionnaire completed by participants at the end of the information session, and the focus group questions, appear in Appendix A.

Participants for the forum were recruited through an advertisement in Xtra! and through the distribution of a flyer to ASOs and HIV outpatient and primary care clinics. As the number of possible participants was limited, expressions of interest were not accepted on a first-come, first-served basis. Rather, attempts were made to ensure gender and ethnocultural representation and a balance between people receiving disability benefits from public and private sources. Participants were paid an honorarium of $50 for their attendance.

2.4.4 Project Advisory Committee

A committee of representatives of ACT, TPWAF and a person living with HIV who had returned to work met formally on two occasions to monitor the progress of and provide input into the project.

The committee reviewed a draft of the questionnaire used at the action research forum and a draft of this report.

Section 3: Overview of the Literature and Documentation Obtained

3.1 HIV in the Workplace

There is already a large body of literature, much of it from the United States, dealing with the issue of HIV in the workplace. Much of this literature is aimed at appraising employers and managers of their rights and responsibilities in regard to employing persons with HIV (and persons with other disabilities) and meeting obligations arising under disability discrimination legislation. For example, the Business and Labor Resource Service of the Centers for Disease Control and Prevention (http://www.brta-lrta.org) documents a plethora of guidebooks, policy papers and other documentation informing employers about reasonable accommodations, disability insurance, model anti-discrimination policies, occupational health and safety issues and employee/family education programs. This literature comes in a variety of forms and from many sources including AIDS and disability service and advocacy organisations, government civil rights and social assistance agencies, trade unions and employer/industry associations.

An equally large body of literature from the US is aimed at PHAs and people with other disabilities, addressing similar matters as well as further issues such as pre-employment HIV testing and disclosure (an example is the National AIDS Fund's HIV/AIDS: A Guide for Employees, 1994).

Canadian literature which addresses HIV in the workplace issues includes the CAS AIDS in the Workplace manual, the Canadian Human Rights Commission pamphlet HIV and Discrimination in the Workplace, the flyer Know Your Rights: AIDS and AIDS-related Illnesses and the Human Rights Code (Ontario Human Rights Commission, 1993) and AIDS and Workplace Policy (Canadian Public Health Association, 1997).

3.2 Insurance, Benefits and Leaving Work

A wide range of literature for PHAs has focussed on leaving work and legal/financial issues such as accessing insurance and disability benefits. Examples from the United States include Social Security Benefits for PHAs (US Social Security Administration, May 1994) and The Benefits Game: Solving the Puzzle of Insurance and Government Benefits (AIDS Legal Referral Panel of the San Francisco Bay Area).

Canadian ASOs and government agencies have produced some literature dealing with eligibility for disability benefits. This includes Health Canada's series Meeting the Income Support Needs of People living with HIV/AIDS, and CAS's forthcoming Guide to Insurance Benefits for People living with HIV/AIDS (currently in draft form and expected to be available early in 1998). CAS has also produced a number of recent briefing papers dealing with HIV-related poverty and problems with current income replacement programs available to PHAs.

This report does not deal in further detail with literature about HIV in the workplace issues, or literature designed to assist people to leave the workforce. However it is acknowledged that combination therapy will not only contribute to some PHAs re-entering the workforce, but is likely to result in far greater numbers of PHAs remaining in their current employment.

The need for workplace HIV education is therefore likely to be greater than ever before. However, recent data from the National AIDS Fund suggests that, at least in the United States, such programs are actually less common than they were five years ago “AIDS Training at Work Less Common”, Crain’s Chicago Business, 10 November 1997. This issue is the subject of further comment and recommendation later in this report.

3.3 Return-to-Work and Vocational Rehabilitation for PHAs

There is now a growing body of literature dealing with "return-to-work" issues for PHAs. Some of this material has emerged as part of general media hype about "the end of AIDS?" since the XI International Conference on AIDS in 1996. In some ways "return-to-work" has become a "pin-up" AIDS issue, emblematic of the changing face of AIDS since the advent of combination therapy.

Other material focuses on work being done in this area by ASOs and AIDS advocacy organisations. This section provides an overview (not necessarily exhaustive) of current relevant documentation, most of which has been produced in the last 12 months.

3.3.1 General Media, Journals and Newsletters

A range of general media articles dealing with the improved prognosis for PHAs has appeared over the last 12 months. In 1997, articles dealing specifically with PHAs returning to work have appeared in such publications as The Wall Street Journal, USA Today and The San Francisco Chronicle. AIDS Policy and Law, AIDS Treatment Update, the newsletter of the National AIDS Fund and the Australian National AIDS Bulletin have all covered this issue.

Of special interest is the July 1997 issue of Focus, a monthly publication of the AIDS Health Project, affiliated with the University of California San Francisco. This is devoted entirely to the return-to-work issue and contains several informative articles on psychosocial aspects of returning to work, as well as references to academic studies on the relationship between employment and health for people living with HIV/AIDS.

3.3.2 Research, Policy and Advocacy Documentation

a. Canada

CAS’s government briefing paper The Federal Role in Disability Issues: Implications for Persons Living with HIV/AIDS (October 1996) outlines a number of broad policy issues in this area. These include disincentives to labour force participation by PHAs as a result of the inflexibility of current income support programs, restrictive taxation mechanisms which prevent people with disabilities from offsetting drug and other costs, legal issues including access to federal discrimination mechanisms, same-sex spousal benefits and immigration. CAS's A Guide to Benefits for Persons Living with HIV/AIDS is referred to in Section 3.2 above.

In September 1997, BCPWA released its document Issues and Guiding Principles for Return to Work, Vocational Rehabilitation and Rehabilitation Services in the Context of HIV. This document emphasises the right to self-determination for PHAs in electing to return to work, and the need for flexible rehabilitation options which accommodate the cyclical, recurrent nature of HIV disease.

b. United States

Many large ASOs in the United States have begun either to develop or implement programs and services aimed at assisting PHAs to return to work. A variety of documentation about these programs was obtained.

i. Northwest AIDS Foundation (NWAF), Seattle

NWAF conducted a "Back to Work Survey" of PHAs in March 1997 to assist with planning its programs and services. In September 1997, NWAF published Returning to Work: New Horizons for Individuals Living with HIV/AIDS. This document is a reference manual to help PHAs navigate federal and state disability programs. The manual contains a summary of the major United States disability programs, their work incentive schemes and trial work periods allowed under them. A series of worksheets enables PHAs to calculate the impact of work-related income on disability entitlements. Information about housing, health insurance and referrals to local organisations are included.

ii. AIDS Project Los Angeles (APLA)

APLA's Assisting Persons Living with HIV/AIDS to Return to Work: Findings from Three Focus Groups (April 1997) outlines PHAs’ motivations for returning to work, obstacles to employment, and preferred employment options (largely focussed on computer-related jobs). Recommendations in the report include the development of a vocational assessment process, identification of flexible employment options, provision of both counselling and information on benefits, development of information and referrals to vocational training and education services, and employer education.

iii. Gay Men's Health Crisis (GMHC), New York

In July 1997, GMHC, in collaboration with Mobilizing Talents and Skills (MTS) and the National Association of People with AIDS (NAPWA), conducted a two-day public policy roundtable on returning to work with HIV/AIDS. Representatives from several Canadian ASOs and advocacy organisations attended the meeting. The minutes of the meeting outline guiding principles for return to work initiatives, public policy priorities (welfare reform), education and advocacy priorities (including HIV education for government benefits and VR workers), the need for incentives for employers to hire PHAs and further research to demonstrate the economic advantages of PHAs returning to work. The Canadian participants developed their own set of policy priorities, and these have been incorporated into the guidelines developed by BCPWA (see 3.3.2 above).

 

iv. National AIDS Fund (NAF), Washington DC

NAF has taken a significant lead on the return-to-work issue in the United States through its Return to Work Initiative (RTWI). The RTWI aims 1) to provide resources to PHAs, 2) to perform outreach, motivation, support and education to employers and the business sector and 3) to perform advocacy on income replacement and benefits in the insurance industry.

The NAF-RWTI has published proceedings from policy roundtables it has held with PHA organisations, employers and (not yet available) the insurance industry. NAF also publishes a monthly newsletter which provides updates on the RTWI. The NAF website also contains references to thousands of books, periodicals and videotapes related to managing HIV/AIDS in the workplace.

Amongst NAF’s most recent publications are Return to Work Issues for Persons Living with HIV/AIDS: A Health and Medical Checklist (1997) and Return to Work Issues for Persons Living with HIV/AIDS: A Personal Assessment Tool (1997). The “checklist” sets out basic health and medical questions which PHAs should ask themselves and/or their physician when thinking about returning to work. These include current clinical results, a self-assessment of daily activities and energy-levels, capacity to tolerate stress, cognitive skills and levels of depression and anxiety.

The “personal assessment tool” provides an extensive overview of issues for PHAs to consider, including a checklist designed to help assess 1) the pros and cons of returning to work and 2) what kind of work to do (is the motivation job satisfaction or supplementing income? What skills does the person have or could s/he acquire?) There is a lengthy section examining issue of disclosure to prospective employers including testimonies from PHAs as well as people with other disabilities, such as multiple sclerosis.

NAF is also preparing an annotated bibliography of return-to-work materials. NAF materials are available from http://www.aidsfund.org.

v. Betty Kohlenberg, San Francisco

Kohlenberg is a vocational counselling consultant who has written extensively about psycho-emotional aspects of returning to work with HIV. She focuses on practical issues such as disclosure, handling difficult questions during interviews (eg explaining gaps in a resumé) and asking for accommodations in the workplace. Her publications include Answering Illegal Interview Questions (1997), Answering the Hardest Interview Questions: Why Did You Leave Your Job? What Have You Done Since Then? (1997) and Discussing Your Disability: Should you Say Anything? (1997). These may be obtained from the National AIDS Fund.

3.3.3 Programming Material

a. Mobilizing Talents and Skills, New York

The MTS guidebook Making Decisions about Employment, Benefits and Health Insurance: Returning to Work with HIV/AIDS contains information on how working affects benefits and medical insurance entitlements. MTS also publishes a quarterly newsletter and a series of pamphlets on its transitional employment model. The MTS Strategic Plan 1997-99 contains an overview of its programs and services and the anticipated increase in demand for them.

MTS is also discussed in Section 4.3 below.

b. AID Atlanta

AID Atlanta's Reconstruction package is a comprehensive manual containing modules for running information forums for PHAs on return-to-work issues. Each module addresses a different topic and contains handout materials and participant evaluations. Forum topics include "Creating a Reconstruction Program for your Community", "Separating the Myths from the Facts about Treatment Success", "Psychosocial Issues During a Time of Transition", "The Tangled Web of Public Benefits", "Financial Planning for the Indefinite Future" and "Tools for Re-entering the Workforce”. AID Atlanta offers technical assistance and support for other agencies seeking to adapt the package.

c. World Institute on Disability (WID), Oakland, California

WID is an international public policy centre on disability issues. It is currently revising its Vocational Rehabilitation and HIV/AIDS: A Resource and Training Manual (1994). Designed as a training manual for vocational rehabilitation service providers, it contains extensive sections on HIV as a disability, the medical, treatment, psychosocial and legal dimensions of HIV infection, best practice models in vocational rehabilitation, workplace accommodation, business and employment issues and an overview of particular US programs. Although the current edition of this manual pre-dates recent advances in the treatment of HIV, it is still quite a comprehensive resource for vocational rehabilitation workers new to HIV/AIDS issues.

WID also publishes the pocket-size Work for Life! An Employment Guide for People with HIV/AIDS (undated) which has information on reasonable accommodations and what to expect from the rehabilitation process.

d. Miscellaneous resources

A number of miscellaneous articles and references was obtained from Internet searches. These include bibliographies of HIV in the workplace resources and abstracts from academic journals.

• An index to the literature appears in Appendix C.

Section 4: Consultations with AIDS Service Organisations

4.1 AIDS Service Organisations in Toronto

In Toronto, the two ASOs which offer advice about disability benefits (ACT's Insurance Benefits Clinic and the TPWAF case manager and benefits counsellor) currently appear to be the principal port of call for PHAs who are thinking about returning to work. This is consistent with the findings of our own and other surveys of PHAs which indicate that impartial information on disability benefits is the single most important, immediate need of PHAs who are thinking about returning to work. Almost all the other ASOs consulted in Toronto had referred clients either to ACT or to TPWAF for benefits advice.

Both the ACT clinic and TPWAF staff reported steady increases in the number of PHAs attending with queries about the likely impact of returning to work upon benefit entitlements. Individual ACT insurance counsellors report at least one person per session asking about this issue. However the issues described by volunteer and paid benefits counsellors at the two organisations reflected their different client bases.

4.1.1 Long Term Disability (LTD) recipients

The ACT clinic counsels people who are receiving benefits under an LTD plan, that is, it provides advice about issues arising under various types of insurance policies. These also include health and drug insurance plans and, until recently, a large number of “living benefits advances” under life insurance policies. This client group predominantly comprises white gay men between the ages of 20 and 40 years employed in white-collar occupations, including unionised white-collar and public sector employees.

PHAs in this client group tend to regard themselves as having "more to lose" than recipients of social assistance. The risk of losing sometimes generous LTD benefits is seldom matched by real prospects of rehabilitation with a previous employer, especially where the employment relationship has not been maintained during the period of disability. Clients generally are distrustful of insurance companies and anxious about the capacity of insurers to look beyond improvements in clinical status to broad workplace issues such as confidentiality and the potential for discrimination upon returning to a previous job.

4.1.2 Social assistance recipients

A significant portion of the client group at TPWAF comprises PHAs receiving disability support through a social assistance agency (either FBA, CPP, EI or GWA). This group often requires support around a broad range of issues (housing, income support and poverty, medical services, access to medications, substance use) amongst which HIV may not necessarily be the dominant factor.

Some of these PHAs have limited employment histories or educational qualifications. This group was likely to need pre-vocational and life skills training, case management and counselling (especially around confidence and self-esteem) before being able to actively pursue employment.

Presently, some TPWAF clients are thinking about working "under the table" due to fears about losing their current drug benefits. The effect of part-time work on continuity of benefits is complicated by the inconsistency of standards used by CPP and FBA. FBA offsets benefits according to the amount earned, while CPP assesses eligibility according to the number of hours worked.

The imminent replacement of FBA with the Ontario Disability Support Program involves a potentially dramatic change to eligibility for disability benefits in Ontario. GWA payments are also to be superseded by the Ontario Works (work for welfare) program. Despite assurances from the provincial government that people presently on FBA will be unaffected, the true impact of these changes for PHAs cannot yet be assessed. However, it is likely that they will cause considerable anxiety and result in an increased demand for benefits advice from ASOs (see Section 7 for further information about these changes).

Both ACT and TPWAF have made a very small number of referrals to existing vocational rehabilitation services in Toronto, but due to the recent nature of the return-to-work issue, have been unable to gauge the outcomes of these referrals for the individuals concerned.

4.1.3 Treatments

Queries to ASOs involved in providing HIV treatment information (principally CATIE in Toronto) usually raise the return-to-work issue in the context of access to medications. Continuity of drug coverage is a critical concern for any PHA considering a return to work. PHAs are also fearful that the prospect of high drug costs will act as a deterrent to prospective employers.

Ontario's Trillium Drug Program (Trillium) appears to intimidate some PHAs who feel that they are unable to afford the up-front deductible payable prior to accessing the scheme. The deductible is based on an assessment of the previous year's income, although PHAs who have not worked for a number of years may not have submitted recent tax returns and consider this requirement something of a hurdle. More importantly, PHAs are concerned about the 6-12 week waiting period for Trillium applications to be processed and consequently, possible gaps in drug coverage during any transition back to the workplace.

The likely impact of a work schedule on an individual's capacity to comply with different HIV drug regimens is also critical. Dosage and storage requirements, side effects, associated dietary needs and fluctuations in energy levels will influence any decision about returning to a particular work environment.

4.1.4 Ethnocultural communities

PHAs from ethnocultural minority groups often face a variety of employment barriers which are only compounded by HIV infection. These include language and cultural barriers to health care, treatment information, benefits advice and employment opportunities.

Although some PHAs would prefer to obtain work within their own communities, concerns about confidentiality and disclosure have also led to isolation for PHAs within these communities. While some had returned to previous employers, most were looking for new employment options. Service providers reported that boredom and a desire to re-take control of their lives (rather than financial motivation) were the main incentives for their clients considering a return to work. Some clients were concerned about being forced back to work by their insurers.

Services likely to be of assistance included information about rights as an employee with HIV, information about benefits and changes to social assistance programs and pre-vocational training (planning for work, preparing a resumé, explaining absence from the workforce to employers and colleagues). Vocational assessment, aptitude tests and career counselling were considered potentially helpful to those seeking a change from their former work. Computer skills was the most-frequently requested training need. Ongoing counselling and support through any transition back to work were thought to be essential.

Referrals which had been used by some of these organisations included career counselling at Canadian National Institute for the Blind (for a PHA with CMV retinitis), African Skills Training Centre and CANTC (Canadian-African Newcomers Training Centre).

4.1.5 Women

For women, living with HIV also compounds existing employment barriers such as family and relationship issues, children, substance use, sexual abuse and poverty. Women have been slower to take up combination therapy, and in their frequent role as caregivers for children, partners or older family members, often attach less priority to their own needs. Accordingly, few women involved in Voices were reported to be considering a return to work.

In addition to overcoming the barriers referred to above, Voices felt that its members were likely to need support to deal with low levels of confidence, self-esteem and assertiveness prior to contemplating any return to the workforce.

4.1.6 Prisoners

PASAN focuses its activities on providing support to PHAs who are presently incarcerated. Support for PHAs leaving prison usually involves referral to agencies such as the John Howard and Elizabeth Fry Societies. These agencies aim to stabilise ex-prisoners’ lives with assistance in housing, health care, treatments and income support.

Any programs aimed at assisting ex-prisoners living with HIV/AIDS must address the additional stigma of having a criminal record.

4.1.7 Health care workers and caregivers

Staff at Sunnybrook’s HIV Outpatient Clinic indicated that the return-to-work issue demanded a change of mindset for health care workers and other caregivers. As HIV changes, so do their traditional roles and responsibilities. Service providers are being required to reassess the nature of their work, and require education, information and referral resources in order to assist PHAs who are thinking about returning to work.

At the same time, hospital-based clinics were thought to offer considerable expertise in areas such as assessment of functional abilities, occupational therapy, support and counselling. Collaborations with them were thought to be potentially valuable.

4.1.8 Summary

The smaller ASOs in Toronto doing advocacy and support work for women, prisoners and in enthnocultural communities have to date dealt with the return-to-work issue only on an ad hoc basis for small numbers of clients. Issues for their clients cover the spectrum of concerns about continuity of drug access and benefits mentioned elsewhere in this report, but these barriers are often compounded or overshadowed by underlying social inequity and marginalisation.

While these ASOs anticipate an increase in queries about returning to work, they lack the resources, staff and referral information necessary to deal with them in a comprehensive way. The ACT clinic and TPWAF staff are currently the main points of referral. Small ASOs are therefore looking to ACT to provide leadership on return-to-work initiatives which are inclusive of their constituencies.

Many service providers are also being required to reassess the nature of their work and to develop new skills and attitudes in an uncertain, but more hopeful climate. Opportunities need to be provided for dialogue about the changes and challenges now being experienced by workers in ASOs and health care settings.

4.2 AIDS Service Organisations elsewhere in Canada

CAS is participating in the Health Canada HIV Rehabilitation Project, which is presently developing a resource on HIV and rehabilitation for physicians, rehabilitation specialists, community groups and the HIV community (this project is a module of the Comprehensive Guide to the Care of Persons with HIV Disease). In addition to providing information about rehabilitation for specific functional or cognitive impairments such as vision loss or dementia, the document will also address psychosocial issues about return-to-work and vocational rehabilitation. It is expected that this resource will be available in English and French in Spring 1998.

In October 1997, CAS received funding from Human Resources Development Canada's Opportunities Fund to conduct a national eight-month study entitled Labour Force Participation for PHAs: Opportunities, Barriers, Interventions. The objectives of this study are 1) to identify specific opportunities and barriers for PHAs in returning to or remaining in the workforce, 2) to identify innovative vocational programs and services and 3) to identify any changes required in public and private VR services and income support programs to better meet the needs of PHAs.

The project will involve a national PHA survey/needs assessment to be distributed through CAS member organisations, as well as community "roundtable" consultations with PHA organisations in each of the five CAS regions. This project is likely to draw and expand upon the preliminary work of this study. It is expected to be completed in late Summer 1998.

4.3 AIDS Service Organisations in the United States

Some American ASOs are now offering a variety of services designed to assist PHAs return to work, ranging from legal, financial and benefits clinics to programs similar to the AID Atlanta Reconstruction program (see section 3.3.3 above).

Two of the most prominent ASOs specialising in VR in the United States are discussed below. They are of interest because their services are founded on the premise that PHAs are more likely to remain in good health while they remain productive, social, working members of the community.

4.3.1 Mobilizing Talents and Skills (New York)

MTS was founded in 1988 by two New York University physicians who had observed in their own HIV medical practices that employed patients experienced fewer opportunistic infections, better mental and physical health and a superior quality of life than their patients who stopped working and went onto disability benefits. Their unemployed patients experienced more depression and lower self-esteem which, in their view, directly affected physical well-being.

MTS is the only non-profit organisation in New York which specifically helps PHAs to return to work or continue working. It offers up to 600 PHAs a year a comprehensive range of services including employment counselling, benefits analysis, job training and temporary and permanent employment services, based on its motto "employment is a treatment that works".

MTS services have evolved due to a strong relationship with New York's publicly funded vocational rehabilitation agencies, which now refer many of their own clients directly to MTS for vocational assessment and training.

4.3.2 AIDS Benefits Counsellors / Positive Resource (San Francisco)

Since 1988, the mission of AIDS Benefits Counsellors has been to maximise the financial independence and quality of life of PHAs through access to public and private income and insurance benefits. In 1996 it merged with Positive Resource, a PHA employment service organisation. The objectives of the two organisations are now 1) to strengthen the capacity of the AIDS service delivery system to cope with the changing client needs from advances in HIV therapy and 2) to integrate benefits counselling with vocational counselling and employment placement services, creating a "continuum" of services which respond to clients' needs.

ABC/PR employs a team of professional benefits counsellors and provides a job-listing service to PHAs. It refers clients to "job orders" placed by ASOs and other non-profit agencies as well as to jobs with employers who have approached ABC/PR as a temporary employment agency or because ABC/PR has asked employers to announce job openings to it preferentially.

Employment support is provided by weekly workshops which teach interview skills, employment rights, resumé writing, vocational skills analysis and job-hunting techniques. Other workshops provided by local experts include topics such as Working While Receiving Benefits, Employment Discrimination and Working with Temporary Placement Agencies. ABC/PR offers office computer training and co-ordinates its activities with government and community-based vocational rehabilitation agencies. ABC/PR facilitated over 450 successful job placements in 1996.

Section 5: Action Research Forum

5.1 Overview of Forum

The action research forum took place at the Central YMCA in Toronto on October 27, 1997. Twenty-one people living with HIV/AIDS participated in the forum, all of whom were both currently receiving some form of disability income and considering returning to the workforce. Over 100 people responded to the advertisement for the forum, which appeared in one issue of Xtra! and was distributed to local ASOs, outpatient HIV clinics and Toronto-based primary care physicians. Every attempt was made to ensure that the group reflected the diversity of the HIV community in Toronto.

5.2 Results of the Questionnaire

5.2.1 Sociodemographic items











The average period on disability for the participants was over four years. One-third of the group reported that their health had improved “a lot” in the previous 12 months, while a further third said their health had improved “somewhat”.

5.2.2 Work History

a. Previous employment

The group reflected a very wide range of previous occupations. These included positions in management, clerical/administration, service and hospitality, computers, sales, health care, the film industry, academic research and manual labour. Some had worked in a number of different fields.

b. Returning to previous employment versus new employment

Twelve of the twenty-one participants were considering returning to their previous employment. The remaining nine participants cited the following reasons for not wanting to return to their previous employment:


c. Reasons for leaving previous employment

For the majority of participants, the main reason for leaving their previous employment was poor health. However, a number of other reasons, including stress and discrimination in the workplace were cited as having contributed to their decision to leave work.

5.2.3 Returning to Work

a. Future expectations

As can be seen from the graph below, the vast majority of participants were feeling optimistic about their future:


“Now I have longer term goals than before I started feeling better.”

“It is difficult and scary to look beyond the past. But the past doesn't have to be the future. Doing something different from what you did before can benefit you.”

b. When to return?

Eighteen of 21 participants were hoping to return to work within the next 12 months. Some had already begun the search for employment or re-training opportunities. Half the group was currently doing some kind of volunteering.


c. Reasons for returning to work

Participants were asked to choose three reasons why they were considering returning to work, in order of priority:

The overwhelming priority in returning to work was to feel more productive and contribute more to society. Expanding one's social network was a secondary priority and a sense of responsibility to “work when well’. The desire to earn more money was cited less frequently.

“In my case it has been proven over the years that my best option is to have a purpose to get out of bed in the morning and face a fresh day.”

d. Role of the physician

Only half of the group had discussed with their doctor the possibility of returning to work.

e. The future work environment

Two-thirds of the participants were hoping to return to work part-time. Only 7 participants wanted to work full-time.

Participants were asked to highlight any special considerations they would require from an employer from a list provided.


The overwhelming need was for flexibility of hours or to work at home. For this group, physical needs in terms of workplace accommodation, traditionally a major component of vocational rehabilitation for people with disabilities, were not of major concern.

“Creating work-from-home situations would be ideal.”

5.2.4 Services Which Could Help

The chart below shows that participants prioritized financial and benefits advice as a service they needed during the process of assessing a potential return to work. Retraining, counselling (including career and self-esteem), job placement/listings and job search skills were also high priorities for many participants.

“I’d be delighted to go off LTD if my drug coverage was guaranteed, even if I changed employers.”

“Psychological preparation/counselling is important in support of my returning to work. I need to regain self-esteem and confidence that I am still very productive and can be as healthy as I feel.”

5.2.5 Concerns / Barriers to Returning to Work

Participants were asked to rank to what extent a particular issue was of concern to them. An extensive list of potential issues was listed (see next page).

The potential loss of benefits (both health and drug-related, as well as income and housing-related) was the issue of greatest concern to the largest number of people. A large number of people was also greatly concerned about dealing with issues around the flexibility of potential employment, including grappling with side effects at work, being able to attend regular doctor's appointments, having a ‘trial’ work period or part-time hours. Half of the group highlighted disclosure of HIV status as an area of concern, and a quarter had concerns relating to disclosure of sexual orientation. Half the group was concerned about their potential lack of skills and experience as a barrier to their returning to work.