Vancouver HIV/AIDS
Care Co-ordinating Committee
Public Sections
Documents: Environment Report 1999-2002
This is a companion document to the Strategic Plan and a work in progress; this version March 31, 2000
LIVING AND WORKING CONDITIONS
LIVING AND WORKING CONDITIONS
Adequate income is essential for the maintenance of health for persons living with HIV/AIDS. There is well-documented local and global research which links poverty to a shorter survival time for such persons and higher socio-economic status to a slower progression of HIV/AIDS.
Social status is also a vital component in an individual’s personal capacity to effectively negotiate societal systems. An individual who is treated with the dignity and respect generally accorded those with high social status is more likely to benefit from the services offered by representatives of those systems.
A very large percentage of persons living with HIV disease became infected when they were relatively young, before they had developed an extensive attachment to the workforce. Health Canada has determined the average age for HIV infection in Canada is now about 23 years. Others, while older, have either been unable to continue working for health reasons, or were never really attached to the workforce in the first place.
Whatever the particular situation, many persons living with
HIV/AIDS in the Vancouver area today must rely on some form of
income assistance such as BC Benefits/BC Disability Benefits,
Employment Insurance (EI medical), Canada Pension Plan
(disability) and for some people, private long term disability
plans. The income from these sources is extremely limited and
does not provide adequate income allowance to provide for proper
housing, proper food, nutritional supplements, vitamins, over the
counter medications, bottled water or transportation costs (e.g.,
to and from medical appointments). CHRP data indicate that 15% of
participants received help with transportation from an agency,
group, organization or individual at least once in the two weeks
prior to being interviewed, and 17% received help with clothing
and household goods.
Most CHRP participants are receiving income assistance. The median annual income of IDUs in the CHRP study, regardless of stage of HIV, is $9,732 ($811 dollars per month). The annual income of non-IDU CHRP participants is slightly higher, varying by stage, from $9,780 to $11,964 ($900 a month). The difference in amounts is not significant.
For the above chart the participant numbers are as follows:
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Stage I II III IV Non-IDU 17 67 65 110 259 IDU 9 54 75 71 209
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Ministry of Human Resources
Individuals who meet eligibility criteria receive monthly income assistance under BC Benefits legislation of $500 (basic benefits), $596 (disability level 1) or $771 (disability level 2).
Statistics Canada has established a monthly low income cut-off for the lower mainland at $1,451 for one person and $1,813 for two persons living together. This means that a single person receiving MHR income assistance at the basic level is supported at $951 a month below the low income cut-off level. A person receiving MHR level 2 disability benefits, or a combination of Canada Pension Plan and MHR disability benefits totaling $771 a month, is supported at a level that is $680 a month below the low income cut-off.
All applicants for BC Benefits who meet basic eligibility criteria qualify for basic benefits. In order to qualify for disability benefits at either level 1 or level 2, an application must be completed by the applicant, his/her medical practitioner and a qualified assessor. Some individuals, such as refugee claimants, may apply for disability designation but qualify only for basic assistance.
The disability application requires comprehensive information about how an applicant’s disabling or medical condition affects daily living tasks such as:
Personal care Housework Grocery shopping and food preparation Finding a place to live and maintaining it Basic time and money management Transportation Childcare
Supplementary funds for a special diet allowance (e.g., high protein) may be available. MHR offices can provide their clients with application forms. Each form must be completed by a physician or dietitian, is usually valid for a 12-month period, and may be renewed by following the same procedure.
There are other ancillary services, such as medical supplies and equipment, that a person with HIV/AIDS may be entitled to through BC Benefits.
Consumer groups report that large numbers of those most at risk (those with mental health difficulties or addictions) are not receiving the level of benefit to which they are entitled because their health conditions are barriers in and of themselves to successful completion of the application and assessment process.
All transitions between the different types of income assistance take considerable time and present difficulties to an already ill person. Providing smoother, easier transitions between the various sources of income support would greatly benefit a person with HIV/AIDS. Inter-agency and inter-ministerial coordination could reduce the difficulties experienced by clients in these circumstances. Clients are encouraged to contact a community advocacy organization for assistance.
In consequence of protracted and concerted lobbying by the BC
Persons With AIDS Society, the Ministry of Human Resources
recently established a multidisciplinary advisory group, with
representation from BCPWA, to review the issues and to recommend
solutions for meeting the ongoing health needs of clients living
with HIV/AIDS. Results are anticipated by mid-1999, at which time
it is expected that funding for additional health goods and
services will be made available to persons who are HIV-positive
and receiving disability benefits.
Pension monies are available under the Canada Pension Plan for
persons with disabilities who have paid into the plan through
involvement in the workforce and who meet eligibility criteria in
terms of numbers of years worked. Each applicant must be assessed
by a physician who will certify that the individual is no longer
able to continue working. CPP benefits vary in amount, depending
on individual contribution history. Most payments are in the $500
to $675 per month range. These benefits cannot supplement
financial support available under the provincial BC Benefits
plan. Canada Pension Plan monies are now deducted from the amount
available under BC Benefits.
Individuals who are unable to continue working may be eligible
for Medical Employment Insurance. Benefits available depend on
work and contribution history. Once benefits run out, an
individual who is unable to return to work may apply for Canada
Pension Plan and/or BC Benefits support.
Relatively few individuals living with HIV disease have access to private disability plans. To illustrate, as of March 1998, more than 1,700 AIDS Vancouver clients were receiving income assistance under BC Benefits legislation while fewer than 200 clients received income from a private disability plan.
Each plan has different eligibility requirements and it can be
difficult for those who have an HIV diagnosis to enrol in a plan,
given that many plans have restrictions regarding
"pre-existing conditions."
The disparity between level of income support available and actual cost of living with HIV disease in Vancouver has resulted in the development of a number of community services whose goal is to address some of the gaps which have developed. A good example is the network of food providers now in operation. Many persons living with HIV disease must scrimp on their food budget to make up the difference between MHR’s shelter allowance and the actual cost of housing in Vancouver.
The Vancouver Food Bank provides an ongoing free food service for those in need. The AIDS Vancouver Grocery, which is supported by the Vancouver Food Bank, the Tzu Chi Compassionate Relief Foundation and the MAC Foundation, provides a more specialized grocery service to persons living with HIV on a limited income. In an average week, the Grocery serves about 500 individuals. This service is designed for persons able to prepare their own meals. If someone is ill and unable to attend the Grocery, delivery may be arranged. Vancouver Native Health Society also operates a weekly food bank, in conjunction with their outreach program, for persons living with HIV. There is also a wide range of food providers who distribute meals and sandwiches.
Building Nutritional Health: HIV, Injection Drug Use, Poverty and Nutrition in Vancouver’s Downtown Community, a report prepared by the HIV, IDU and Nutrition Working Committee, looks closely at the experience of getting food while living in poverty.
BCPWA’s Complementary Health Fund reimburses qualifying members up to $35 per month for receipted purchases of vitamins, nutritional supplements, bottled water and other health care products and services not covered by Medicare or Pharmacare.
BCPWA’s Polli and Esther’s Closet offers free clothing and small appliances to those in need. Located in the Pacific AIDS Resource Centre, Polli and Esther’s is open Wednesdays and Thursdays from 11:00 a.m. to 2:00 p.m. and is supported entirely by donations. BCPWA members may shop there once a week. Some items, such as jackets, jeans and running shoes, are restricted to one/one pair per member per month.
Community organizations are also called upon to assist financially with the purchase of essential medications for persons living with HIV disease. CHRP asked its participants if they had received any financial help from a community agency to obtain therapeutic drugs, such as anti-fungals. The chart below shows that 5.5% of non-IDUs and 2% of IDUs received help with obtaining therapeutic drugs at least once in the two weeks prior to the interview.
More generally, CHRP found that 9% of non-IDUs and 5% of IDUs
received some form of financial help from a community agency at
least once in the two weeks prior to the interview.
Advocacy
Community advocates, social workers, clinic staff and community
case managers are able to help individuals living with HIV/AIDS
gain access to programs and services and deal with problems and
issues that arise.
In increasing numbers, HIV-positive persons receiving BC
Benefits, especially those with a Disability Benefits II
designation, are applying for so-called Schedule C benefits.
Under this rather obscure regulation, a successful applicant
could receive additional BC Benefits payments of between $400 and
$600 per month. The application and appeal processes for Schedule
C benefits are extremely confusing and complicated and can take
up to six months. As a result, advocacy services, such as those
provided by BCPWA, are essential in all but a handful of cases.
Traditionally, individuals have depended on family and friends for social support. There are a number of initiatives that acknowledge the importance of family and friends in the context of HIV/AIDS. These include counselling programs that help HIV-positive individuals and their families grapple with a diagnosis, support groups for caregivers and partners, and respite programs that give caregivers an opportunity for a break in providing care.
However, for many living with HIV/AIDS, family and friends are not consistently available. Some have been estranged from family through long histories of individual and systemic abuse, while others have experienced rejection because of HIV status, sexual orientation, substance use, or a combination of factors. Others have lost partners and friends to HIV and find themselves leading relatively isolated lives.
In response to this situation, Vancouver has developed a range of programs and services designed to build social support networks among those affected by HIV/AIDS. These efforts have often been developed by specific groups identified as being at increased risk, or by agencies that have recognized an emerging need. However, more needs to be done; in particular, there is an urgent need for social spaces for gay men outside of the bar scene.
Seropositive individuals living outside Vancouver’s West End and Downtown Eastside areas often find themselves having to leave their own neighbourhoods as they seek to develop social networks. Many individuals living in outlying municipalities depend on Vancouver initiatives when they engage in the process of building a supportive social network.
During 1997 and 1998, the Vancouver Drug Users Organization (VANDU) began building a larger pool of participants and developing different ways of establishing connections in this community. Participants speak with confidence about the impact VANDU has had on their learning.
In early 1998, the Vancouver/Richmond Health Board aided in the establishment of a new agency, intended to assist in the implementation and monitoring of its Downtown Eastside HIV/AIDS Action Plan. The group, called the Consumers’ Board, was intended to be widely representative of the various communities resident in the DTES and included a number of recovering injection drug users.
Both VANDU and the Consumers’ Board have supported the
concept of developing a resource centre in the Downtown Eastside
as a way of building on these initiatives. The Vancouver/Richmond
Health Board and Health Canada have been leading a process to
examine how and where such a resource centre might be developed.
CHRP Findings on Social Support Networks and Community Involvement
CHRP has accumulated data on social support networks and community involvement. The following graphs illustrate some of these findings.
Seventy-six percent of MSM participate in organizations such as community groups, cultural associations, school groups, church social groups, or social, fraternal or civic clubs. Forty-five percent of IDUs participate in similar organizations.
The following graph shows that of those who do belong to organizations, IDUs were more likely to report "not at all" for their level of participation.
CHRP also examined social support and stable/non-stable housing. Participants in stable housing have more reported support than those in non-stable housing. For example, participants were asked several questions, including "Do you have someone to confide in?"
Fifty-three percent of participants in stable housing have someone to confide in most of the time, compared to 36% in non-stable housing.
CHRP also asked participants if they had someone who could help out in a crisis: 56.5% in stable housing said "all of the time," compared to 37% of those in non-stable housing. Twenty-eight percent of those in non-stable housing said they "never" have someone to count on in a crisis, compared to 14% of people with stable housing.
Finally, CHRP asked if participants had someone to advise them on personal decisions: 49.5% of those in stable housing said "all the time," compared to 31% in non-able housing. Twenty-six percent of those in non-stable housing responded "never," compared to 11.5% in stable housing.
From the CHRP data a distinct pattern is starting to emerge: people in stable housing have more social support and a greater social network than those in non-stable housing.
CHRP also looked at volunteer activities as reported by participants. Volunteering is an important way in which persons living with HIV disease can both contribute to creating social support networks for others and participate meaningfully in a social support network for themselves. The graph below shows the response to the question, "Do you do volunteer work?"
CHRP found that 56% of MSM do volunteer work, compared to 25% of IDUs. This fact should be of interest to policy and program planners, as well as to AIDS service organizations.
There is a correlation between volunteering and level of education, as indicated by the charts below.
Level of formal education has a powerful impact on the
HIV/AIDS epidemic in Vancouver. As an example, the BC Centre for
Excellence in HIV/AIDS, through the Vanguard Project, has found
that young gay men with less than high school education are twice
as likely to be risk takers in the context of HIV/AIDS. Once
infected, education levels appear to have a direct impact on how
individuals manage their own health. For example, a 1997 BC
Centre for Excellence study found a positive relationship between
higher levels of education and the use of complementary
therapies.
Again, the CHRP study is able to give us an overall picture of the formal education levels attained by study participants.
CHRP found that 79% of MSM have graduated from high school, compared to 30% of IDUs.
CHRP has also compared education levels with housing and found that of its participants, 38.3% of those with some post-secondary education live in non-stable housing. In comparison, 73.9% of those with less than a grade 10 education live in non-stable housing. Stable housing is defined as living in a house or an apartment with two or fewer moves in the previous year. Non-stable housing is defined as living in housing other than a house or apartment, such as a single room occupancy hotel, boarding house, rooming house, etc., or living in a house or an apartment with more than two moves in the previous year.
Education initiatives relevant to persons living with HIV/AIDS, or those at risk, are available. The Ministry of Education, Skills and Training (Skills BC) offers a range of skills and training programs, although information about access appears to be confusing and complex for many. The Vancouver School Board offers Grade 12 equivalency or GED programs through a number of adult learning centres and continuing education programs.
Prevention initiatives are provided within the education system. YouthCO AIDS Society delivers peer-based education programs at schools.
Resources for professional education and development are currently provided by several organizations:
- Funded by the Ministry of Health, the Department of Professional Education and Care Evaluation of the BC Centre for Excellence in HIV/AIDS is mandated to provide educational programs for practising health care professionals and students in the health care professions throughout British Columbia.
- Funded by Health Canada, AIDS Vancouver’s Training Institute provides training and education on HIV/AIDS in workplaces to employees who work with or provide service to persons living with HIV/AIDS, including recovery house staff, transition house staff, MHR financial aid workers and emergency shelter staff, among others.
- The Justice Institute has been recently contracted by the Vancouver/Richmond Health Board to deliver a training series to newly hired outreach workers in the Downtown Eastside.
Employment/Working Conditions
A number of important issues relating to employment and working conditions fall within the scope of this plan. These include:
- Workplace policies with respect to seropositive employees
- Collective agreements that protect the rights of seropositive employees from workplace discrimination
- Prevention and management of occupational exposure to HIV
- Employee benefit plans that include disability support for workers
- Disability plans and government benefit programs that can reasonably allow those whose health stabilizes or improves to re-enter the workforce without jeopardizing access to benefits in the future
1.
Workplace Policies and Collective Agreements
The now defunct Business and Labour Coalition on AIDS in the
Workplace worked during the mid-nineties to raise awareness about
the need for effective and supportive workplace policies and
enlightened collective agreements on HIV/AIDS. The AIDS Vancouver
Training Institute has provided follow-up support in this area
for workplaces wishing to craft or redesign policies,
particularly in the context of training needs.
2. Prevention and Management of Occupational Exposure to HIV
Occupational exposure to HIV/AIDS and minimizing the risk of
infection are two key issues for health care providers. The
province has established written guidelines on the prevention and
management of occupational exposure to HIV. The BC Centre for
Excellence in HIV/AIDS, in collaboration with the Workers
Compensation Board, has produced a video, The Prevention and
Management of Occupational Exposure to HIV/AIDS, that
describes safe work practices and the management of occupational
exposure while working with all clients.
3. Benefit and Disability Plans
The recent advent of antiretroviral therapies has improved many infected individuals’ health status enough that they are returning to paid and unpaid work. There are only limited services available to train and retrain, counsel or assist those willing to re-enter the workplace. Little research has been done to determine the impact on disability claims if these attempts are short-lived. Few employers have addressed non-traditional work practices that would allow persons living with HIV/AIDS the necessary flexibility to succeed.
The BC Coalition of People with Disabilities led an initiative to overhaul the MHR disability benefits program, with the result that disabled persons no longer have to be labeled permanently disabled but may now receive a designation for the purpose of benefits that recognizes that individual conditions may stabilize and improve at times. The Canada Pension Plan still requires a physician’s certification that an individual is permanently unable to work. Individual disability plans vary in their coverage and flexibility.
In partnership with ASIA, YouthCO and Healing Our Spirit, the
BC Persons With AIDS Society undertook an extensive examination
of workforce re-entry issues. Having concluded and reported on
this endeavour, BCPWA is now embarked on a project in partnership
with the International Association of Machinists’ "IAM
Cares" program to provide counselling and referral services
for persons living with HIV who wish to return to or begin work.
Operating Mondays and Fridays out of BCPWA’s PARC offices,
and Tuesdays, Wednesdays and Thursdays out of the offices of IAM
Cares in Burnaby, the program is operational as of July 1999.
4. CHRP Findings on Employment
The Community Health Resources Project has also looked closely at employment. The graph below shows that there are very high levels of unemployment for both MSM and IDUs living with HIV. The graph is not adjusted for stage of HIV progression. For those in the earlier stages of HIV disease, unemployment rates are somewhat lower: 60% for MSM and 78% for IDUs. Most CHRP participants are in later stages of the disease.
Safe, adequate and affordable housing is a major health determinant for people living with HIV/AIDS and a critical issue for many living at heightened risk for HIV disease. Because of the scarcity of such accommodation, particularly in the lower mainland of British Columbia, there is a critical and urgent need for additional housing options. In terms of preventing HIV transmission, research from the BC Centre for Excellence in HIV/AIDS suggests that injection drug users with unstable housing were twice as likely to become infected with HIV. Another study conducted by the Centre for Excellence and Wings Housing Society shows that seropositive persons with unstable housing are more likely to be admitted to hospital for acute care than those in stable housing.
For those currently homeless or at risk, the affordable housing supply is not adequate to meet the demand. There are a number of new initiatives being developed with the cooperation of BC Housing, the City of Vancouver, the Vancouver/Richmond Health Board and non-profit organizations.
It became clear by the late 1980s that in British Columbia, and particularly in central Vancouver, housing subsidies could promote better health and quality of life, in a cost-effective manner, for people living with HIV/AIDS. Most seropositive individuals are relatively young, do not own their own dwellings, and have not been in the workforce long enough to accrue the kinds of income support benefits needed to maintain even a simple dwelling in Vancouver. Changes to social housing policy, particularly the federal government’s withdrawal of additional social housing support, have meant fewer available subsidized housing options in Vancouver’s downtown peninsula and neighbourhoods have been unable to hold onto their affordable housing. Particularly in Vancouver, this can mean having to live in extremely marginal circumstances, often in single room occupancy (SRO) hotels with shared bathroom facilities. Food preparation facilities, if available, are shared with other hotel residents. Conditions are not conducive to the adequate nutrition and rest, freedom from stress, and medication regimes necessary to effectively fight HIV/AIDS.
There are three methods through which people living with HIV/AIDS can obtain housing assistance:
- Rent supplements
- Non-profit housing
- BC Housing regular applicant stream
1. Rent Supplements
There are 147 portable rent supplements, jointly funded by the federal and provincial governments, that are administered through Wings Housing Society, McLaren Housing Society, Vancouver Native Health and Healing Our Spirit BC First Nations AIDS Society. This number has not increased since 1994 when the federal government ceased providing additional money for housing.
McLaren and Wings Housing Societies have pursued additional
subsidies through private and corporate fundraising. McLaren
currently has 17 privately funded subsidies and Wings had one
funded through a major drug company. McLaren devotes a
considerable amount of time just to maintain funding. Corporate
funding for Wings’ one additional subsidy was not renewed in
1998/1999.
McLaren operates Helmcken House, a 32-unit complex for people living with HIV/AIDS. Wings operates The Bonaventure, a 30-unit, multi-bedroom complex across from St. Paul’s Hospital that houses approximately 57 people. Both of these projects are funded through BC Housing.
The Portland Hotel, operated by the Portland Hotel Society, provides 70 single rooms for some of the most difficult to house, including those living with multiple problems. More than half the residents are HIV-positive. The new Portland Hotel, which is currently under construction, will provide housing in a far more appropriate setting. The Portland Hotel Society receives funding from a variety of sources, including Greater Vancouver Mental Health Services and the Vancouver/Richmond Health Board’s HIV residential care program.
In conjunction with BC Housing and the Vancouver/Richmond Health Board, the Portland Hotel Society is also working on the renovation and operation of the Sunrise and the Washington, two single room occupancy hotels also located in the Downtown Eastside.
Other non-profit housing options, including co-ops, require that the person apply to each site individually. Some have declared dedicated suites for persons living with HIV disease. However, application to non-profit housing can be a time-consuming, complicated task that most people living with HIV/AIDS are unable to effectively undertake, and often those most needy do not live long enough to benefit from the wait.
Bridge Housing Society offers some dedicated housing suites for HIV-positive women and their families.
A small number of housing cooperatives (members of the
Cooperative Housing Federation of BC) offer one suite in their
building that is dedicated to a person living with HIV disease.
3. BC Housing Regular Applicant Stream
BC Housing provides self-contained units in permanent housing
developments for individuals and families.
Current housing situations for persons living with HIV/AIDS are by and large very problematic. The Community Health Resources Project found that in a study including 412 participants, more than 60% of male and female injection drug users lived in one room or less.
Whereas 15% of MSM own a house (most with a mortgage), less than 1% of IDUs own a house with a mortgage. Further, while 47% of MSM rent and pay the entire rent themselves, 67% of IDUs pay the entire rent themselves. It is worthwhile to note that this would largely be attributable to IDUs living in SRO hotels while most MSM are living in apartments (see next table). Thirty-four percent of MSM share the rent with others, compared to 22% of IDUs.
The above graph shows the type of dwelling in which CHRP participants live. The CHRP found that 73% of MSM live in an apartment and 10% of MSM live in a hotel while 28% of IDUs live in an apartment and 55% of IDUs live in a hotel.
Six percent of CHRP participants received help from an agency, group, organization or individual with finding or keeping a place to live in the two weeks prior to their interview.
All agencies are noting a critical shortage of housing for persons living with multiple diagnoses. In 1997, the Vancouver Multiple Diagnoses Committee completed a report titled Looking for Housing Solutions: A Direct Consultation with Vancouver Women Living with Multiple Diagnoses. The women who participated in the study were very clear about what they needed in order to feel safely housed. The majority of women who participated in the study thought staff support attached to their housing would be a good idea.
In spite of new initiatives in the housing
area, longer survival times are only increasing the seriousness
of the safe housing shortage. The table below shows numbers of
subsidies available in the context of waiting lists at various
agencies.
| Housing Wait List Numbers | |||
| Agency | Current Subsidies | Numbers Waiting | 1997 Turnover |
| Healing Our Spirit | 10 | 130 | 2 |
| McLaren | 59 | 150 | 9 |
| Vancouver Native Health | 25 | ? | ? |
| Wings | 102 | 625 | 15 |
Housing workers predict wait lists will continue to grow as the number of people living with symptomatic HIV increases in the wake of more effective antiretroviral therapies.
In terms of HIV-related residential care options, the Vancouver/Richmond Health Board currently funds a 10-bed unit at the Dr. Peter Centre, two beds at May’s Place Hospice, and some programming at the Portland Hotel. At times, waiting lists for these facilities can be long. It is important that further work be done to increase residential care options for those living with HIV within residential care resources in the broader community.
The number of persons requiring some form of supported housing continues to grow. There is a growing group of individuals, often living with HIV and a combination of addictions and/or mental health issues, who are not well accommodated in the current range of housing options. This trend affects the entire service spectrum, from acute care facilities that must delay discharge for lack of options, through to independent housing facilities that try to accommodate individuals who ultimately fail for lack of available support.
In the housing vacuum outlined above, emergency shelters such as Lookout and Triage are playing an increasing role in providing shelter to those without adequate housing and for whom few options are available. In some cases, patients are being discharged directly from acute care facilities to emergency shelters due to the lack of options.
Lookout, for example, currently dedicates five beds for mentally ill people living with HIV disease. There are challenges, though, with medication management, and the shelter has had to rely on the volunteer services of a physician to cope.
