Working with HIV: Issues for People with HIV/AIDS Contemplating Workforce (re)Entry

David J. Martin, PhD. Harbor-UCLA Medical Center
Updated by Kristina R. Rerucha, MPH, American Psychological Association
July 2011

HIV/AIDS. As a result, some clients previously unable to work due to AIDS-related illnesses are now able to consider the possibility of workforce (re)entry in light of their improved health (Weatherburn et al., 2009; Bettinger, 1997; Martin, 1997). Despite health improvements, efforts at workforce entry have not been easy. Obstacles to workforce (re)entry exist for many HIV/AIDS infected individuals, including concerns over uncertain future health, possible loss of benefits, outdated job skills, discrimination, disclosure, and accommodation for HIV/AIDS-related disabilities.

Historically people have cited a number of reasons for working, including:

a) Financial security that contributes to survival and improved quality of life (Schlechter, 1997);
b) Enhanced self-esteem which contributes to improved health (Kasl et al. 1975; Linn et al., 1985); and,
c) The opportunity to create a social support system (Roberts et al., 1997; Vinokur et al., 1995).

HIV/AIDS-infected individuals are no different. While they struggle to overcome significant challenges that affect their ability to live independently and return to the workforce, (re)entry becomes an important factor leading to independence. Benefits of permanent employment for individuals who are able to (re)enter the workforce include decreased depression symptoms and improved peer support than those who are unable to attain employment (Rabkin, 2008).

Research shows there a number of reasons HIV/AIDS infected individuals have when considering workforce (re)entry. Some of these reasons include:

Increased income. For most disabled/unemployed HIV/AIDS infected individuals disability income (e.g., social security disability insurance (SSDI), supplemental security income (SSI)) represents only a fraction of their pre-disability income. Living on disability resources alone represents an ongoing challenge for many, if not most, disabled/unemployed HIV/AIDS infected individuals. Financial reasons are often times the catalyst for HIV/AIDS infected individuals return to work (Arns et al., 2004).

Increased personal meaning. Many people derive a substantial amount of self-worth from their jobs; a person’s self-image is closely tied to the work they do. Self-worth, or a reason for “existence”, may be seriously undermined by disability and unemployment. Workforce (re)entry may, therefore, help to restore a sense of personal worth and meaning for many disabled/unemployed HIV/AIDS infected individuals.

Control and increased self-efficacy. Employment is a setting in which many people express and gain competence, receive positive feedback, expand abilities, and experience a sense of control and achievement. This may be a uniquely important anchor while dealing with a disease that is hard to control.

Reduction of family financial burden. Related to the need for increased income and personal financial stability, many HIV-infected individuals and others with disabilities feel they have become financial burdens to their families because of the financial support their families provide. Employment allows the disabled person to help reduce the financial burden (whether real or perceived).

Increased social interaction. Employment is a major source of social interaction, in contrast to the isolation experienced by many HIV-infected individuals disabled by their disease. Employment may help reduce this isolation.

Contribute to society. For many HIV/AIDS infected individuals, their diagnosis may have spawned a desire to leave a legacy or to make a positive contribution they can leave behind when they die. Finding a job that meaningfully allows such a contribution may help address this need.

Reduction of the role of HIV. Going back to work can add an important and absorbing set of activities that provide a balance to the often-overwhelming considerations that living with HIV/AIDS imposes in a life. Working can help relegate HIV/AIDS to the status of a medical problem, rather than a lifestyle.

However, despite compelling reasons for workforce (re)entry, a number of obstacles often make the transition from disability/unemployment to employment difficult. For people with longer histories of disability/unemployment, these obstacles may suggest that efforts at workforce (re)entry are not worthwhile, or that the costs outweigh the benefits. Research has found that concerns related to possible loss of or change in health benefits, fear and anxiety over the possibility of disclosure, the reality of HIV-related prejudice and discrimination, and relative lack of job skills and/or education are leading factors in not considering workforce (re)entry. Additional issues such as fear of stress that can contribute to overall declines in health outcomes, fear of failure which can lead to further self-disappointment, a loss of social support, and a change of lifestyle they may have grown accustomed to while un(der)employed and receiving social security benefits are additional concerns that should be assessed before workforce (re)entry.

Additional factors constituting barriers arise when looking at the issue from a psychosocial viewpoint associated with HIV/AIDS. As the demographics of HIV have changed, HIV has become increasingly associated with poverty indices and long-term unemployment such as substance abuse and homelessness. People with HIV/AIDS from such backgrounds may not be "disabled" according to the government’s definition (either their disease or associated issues), but they are still unable to work. Due to poor employment histories, these individuals may need additional assistance with (re)entering the workforce, including job preparation and job-hunting.

A number of services HIV/AIDS infected individuals may need in order to assist them in their workforce-entry efforts have been identified (Brooks & Klosinki, 1999; Brooks et al. (1999). These services include employment services (referrals, job listing, interview-skills training), counseling (including benefits counseling), workshops on vocational opportunities, and educational activities. The need for these services was echoed in research by Watts and Kohlenberg (2003) who found the largest barriers to workforce (re)entry remained vocational rehabilitation, career counseling and planning, and employment services.

There are several public-policies that have been made as a result of research-based advocacy efforts by those in the field. These policies make services available to help HIV/AIDS infected individuals with workforce (re)entry.  Some of these policies include:

1. People with HIV/AIDS should be aware of the definition of HIV/AIDS disability.

To be eligible for disability benefits, a person must 1) be insured for benefits, 2) be younger than full retirement age, 3) have filed an application for benefits, and have a Social Security-defined disability (National Academy of Sciences, 2010). Obtaining disability benefits requires applicants to complete a five-step sequential evaluation process to determine whether or not the applicant is disabled or not. This process is different for children and adults over 18 years.

In 1993 The United States Social Security Administration (SSA) adopted disability criteria (HIV Infection Listings) as a way to more rapidly adjudicate disability claims. These listings were loosely based on the Center for Disease Control and Prevention’s definition of AIDS and have not been updated since (even with the advent of effective antiretroviral therapy) (National Academy of Sciences, 2010).

Although the listings have not changed, the categories for HIV disability allowances changed in December 2010.The categories for HIV disability currently include:

Low CD4 Count. CD4 count is an important indicator of HIV stage and acts as a predictor of short-term mortality risk. A CD4 cell count at or below 50 cells/mm3 is the cut-off point for disability. Disability benefits under this category should be reviewed every 3 years.

Imminently Fatal Conditions. HIV-induced diseases that warrant permanent disability allowance are those that are severely disabling, have a high short-term mortality risk, and respond minimally to convenient treatment. These conditions are generally untreatable and the average length of survival for people afflicted with these conditions ranges from 3-24 months (National Academy of Sciences, 2010).

Documented presence of: HIV associated dementia; Mulitcentric Castleman’s disease; Kaposi’s sarcoma involving pulmonary parenchyma; primary effusion lymphoma; and, progressive multifocal leukoencepphalopathy are considered permanent disability.

HIV-Associated Diseases without Listings Elsewhere or in Other Body Systems. Conditions that are associated with HIV infection or its side effects of treatment are considered as a disability if the affected person also has functional limitations using standards under existing listings. The combination of clinical severity and limited functional capacity allows for SSA to determine disability. Disability benefits under this category should be reviewed every 3 years.

Comorbidities induced by HIV and its treatment currently without listings elsewhere that warrant assessment of limitations in functioning to determination of disability include: diarrhea; distal sensory polyneuropathy; HIV-associated neurocognitive disorders; HIV-associated wasting syndrome; Kaposi’s sarcoma; lipoatrophy or liphypertrophy; and, osteoporosis. Symptoms of fatigue, nausea, malaise, and pain should be considered limited functions for HIV-infected individuals with the above comorbidities.

HIV-Associated Diseases with Existing Listings Elsewhere. Many HIV-infected individuals experience higher rates of earlier onset of diseases already included in other body systems (e.g., diabetes, cardiovascular disease, etc.). The prevalence in the Listings for disabling chronic conditions has continued to grow and can be used to help determine disability for some HIV-infected individuals experiencing co-morbid conditions.

HIV-associated conditions that are not covered in the HIV Listing, but elsewhere (particular to HIV-infected individuals) may include: cardiovascular disease; chronic kidney disease; Diabetes, Hepatitis; and, malignancies.

2. People with HIV/AIDS should receive accurate and adequate information on the effects of employment on disability benefits.

Detailed information about employment and its effects on disability benefits are available online at the Social Security Administration’s website.

3. People with HIV/AIDS should have adequate health-insurance coverage, and this coverage should be uninterrupted during the transition from unemployment to employment.

SSDI provides benefits to those determined to be disabled and are subsequently “insured” by taxpayers’ contributions to Social Security Trust Fund. SSDI payments are dependent on a beneficiary’s age, number of people receiving benefits on the account, and previous earned income (SSA, 2010). SSDI beneficiaries receive Medicare.

Supplemental Security Income (SSI) provides cash assistance to aged, blind, and disabled persons who have a demonstrated limited income and resources (SSA, 2010). SSI is funded through general tax revenues. SSI benefits usually are provided along with Medicaid. The amount of money received per beneficiary fluctuates according to an individual’s income.

More detailed information is available online at the Social Security Administration’s website.  The SSA’s booklet, Working While Disabled – How We Can Help, offers great information about transitional coverage while entering the workforce.

4. People with HIV/AIDS-related disabilities need a "transitional work period" to allow incremental increases in work hours, adjustments to daily routine changes, and adjustment to work-related physical demands. Further, people with HIV/AIDS should be provided with information about and access to job-placement services, benefits counseling, skills training, and job-training programs in their community

The Ticket-to-Work and Work Incentives Improvement Act (TWWIIA) seeks to reduce employment disincentives among persons with disabilities, but also to expand the array of employment-related services available by providing vouchers with which clients can select and directly purchase vocational services from rehabilitation providers.

The Ticket to the Work and Work Incentives Improvement Act contains two broad provisions important to unemployed/disabled HIV/AIDS-infected individuals contemplating returning to work:

1. Improved access to employment training and placement services for people with disabilities who want to work; and,
2. States are mandated to provide training and placement assistance to people with disabilities who wish to enter the workforce, usually through the State Departments of Rehabilitation (TWWIIA, 1999).

Under TWWIIA, disabled Social Security Income (SSI) and Social Security Disability Insurance (SSDI) beneficiaries seeking employment assistance are able provided a “ticket” that allows them to obtain vocational services from an Employment Network (EN) consisting of approved providers among private, community-based and governmental agencies. The EN helps those seeking (re)entry with skills training and job-training services as defined by the ticket holder. All services provided are free of charge.

After gaining employment there is a trial work period that allows those (re)entering the workforce to continue receiving benefits as long as work activity is reported. The trial work period lasts for 9 months of employment (does not need to be consecutive). After 9 months of the trial work period a rolling 60-month period occurs where benefits are incrementally decreased (SSA, 2010).

All SSDI beneficiaries and SSI beneficiaries receiving disability payments who are between 18 and 65 years old are eligible to receive a ticket to work (SSA, 2010).

5. A need exists for adequate protection against HIV/AIDS-related discrimination in the workplace.

ADA was passed in 1990 and provides for equal employment opportunity for people with disabilities (ADA, 1998). Discrimination on the basis of HIV/AIDS status in recruitment, hiring, retraining, compensation, benefits, or any other terms of employment is therefore not permitted under the ADA.

6. People with HIV/AIDS are entitled to reasonable accommodations in the workplace to address their medical and health needs.

Since the employer may not ask about disabilities, ADA protections for being disabled are not available until the disability status is revealed. An individual should discuss health concerns and accommodation needs with an appropriate member(s) of the employment organization. This might include staff in Human Resources, an upper level manager, or someone with the authority to implement changes. Individuals who want accommodations must disclose their status as persons with a covered disability that interferes with a major life activity, such as working, to qualify for ADA coverage. In addition, the type of reasonable accommodation requested must be specified. However, neither the employee nor the physician needs to specify the particular diagnosis. In fact, in some cases, it might be recommended that they do not. In the case of HIV, for example, one strategy might be for people to disclose the need to accommodate gastrointestinal problems, fatigue, pain or mobility impairments, rather than disclose that they are living with HIV.

7. A safety net of services is needed to insure service availability if people with HIV/AIDS need to leave work because of declining health.

Trial Work Period (TWP): Allows beneficiaries to test their ability to work for at least 9 months before slowly decreasing benefit amounts.

After gaining employment there is a trial work period that allows those receiving benefits, as long as work activity is reported. TWP begins the first month beneficiaries are entitled to SSDI benefits or the month benefits are filed (whichever is later) (SSA, 2010). The trial work period lasts for 9 months of employment (does not need to be consecutive). After 9 months of the trial work period a rolling 60-month period occurs where benefits are incrementally decreased (Social Security Administration, 2010).TWP does not apply to SSI beneficiaries. Extended Period of Eligibility (EPE) begins the most after TWP ends. The first 36 months of the EPE is the re-entitlement period for benefits allowing those who are no longer working to begin receiving benefits again (SSA, 2010). EPE provided benefits for the months’ earnings are below the substantial gainful activity levels set by the state. EPE does not require re-enrollment or a new application (SSA, 2010).

It is imperative to identify the types of employment, or return to work goals that clients may have in order to more appropriately support them.

Psychologists need to realize the nature of employment services currently available to assist HIV-infected clients (re)entering the workforce. Furthermore, they should explore their own values, as well as their clients, in order to expand upon the range of acceptable activities related to employment.

Psychologists may also need to understand, and help their clients understand, that standard definitions of employment may need to be expanded. Clients may not be able to return to work (even though they may want or need to) immediately due to barriers outside of their control. Some barriers may be those dealing with earnings limitations imposed by the benefit systems- others may be those imposed by their HIV-related illnesses that have placed activity limitations on them. Additional barriers may include:

• Understanding the interplay of medical symptoms, medication side effects, immune system indicators, and client involvement within the medical care system in making informed work related decisions.
• Understanding current financial and legal issues related to HIV and disability.
• Understanding the array of employment and benefits services needed by HIV-infected individuals considering work related changes, including grassroots HIV and employment services.
• Understanding the complexities in defining the nature of success in the consideration of work process, including—at times—identifying successful outcomes that either defer or exclude return to paid employment.

It should be evident that contemplation of workforce (re)entry requires consideration of both substantial opportunity and significant obstacles and barriers. Psychologists may be called upon to assist HIV/AIDS infected individuals to navigate the complex decision-making process of whether to make changes in their work life. This process typically requires a careful benefit-to-risk analysis to help ascertain the feasibility of making changes. If changes are to be made, the analysis helps focus attention on the changes that are in the client’s best interest. Individuals with HIV/AIDS must weigh their options and balance the efforts they anticipate against the benefits they believe they reasonably may expect. Such problem solving should be central in psychotherapy for people with HIV/AIDS contemplating workforce (re)entry.

The risk analysis must take into account individual medical, vocational, financial, legal, and psychosocial factors. Additionally, an appraisal of the current state of medical opinion regarding long-term effectiveness of medical treatments should be revisited.

Below are some recommendations for assessing the inter-related factors for considering work.

Medica Factors

• Determine whether clients have adequate information on which to base their work-related decisions. If not, advise and perhaps assist them in obtaining the necessary information.
• Help clients to evaluate the impact of HIV-related and other medical symptoms, as well as medication side effects, on their physical capacity to work.
• Taking into account the type of work that clients are considering, assess physical capacities, including endurance, strength, flexibility, dexterity, sensory acuity, and psychological capacities (such as interpersonal fitness for work, mood, affect, memory, and concentration). Many of these capacities may have been impacted by HIV-related neurophysiological impairments.
• Assess clients’ understanding of the barriers that their involvement with the medical systems places/imposes on going to work, such as frequent medical appointments, time and pressures of the medication regimes.
• Assess treatment adherence issues and potential need for work accommodations in schedule, responsibilities, and/or physical demands to accommodate side effects.
• Help clients assess their prospects for sustained good health, including review of current and historical medical indicators such as CD4 count, viral load measures, and other serologic markers.
• Take into consideration individual differences related to work values, tolerance of risk, and willingness to work while ill.

Psychosocial Factors

• Take into consideration individual differences related to work values and tolerance of risk. Assess for co-existing, disabling psychiatric disorders such as schizophrenia, bipolar disorder, severe depression, and/or anxiety disorder.
• Assess other concurrent mental health concerns (e.g., substance abuse, depression, anxiety), which may have a deleterious effect on clients’ physical health or poor medication adherence.
• Assess psychological barriers to work (e.g., fear, low self-esteem, self-efficacy, depression, and/or anxiety).
• Help clients to assess the potential demands (stressors) of specific work environments and determine whether they have the psychological and/or social resources to cope with these demands.
• Help clients to develop behavioral programs that will facilitate successful work entry (e.g., incremental increases (work hardening) in work or work-related activities to improve their resilience to stress).
• Help clients identify and monitor stress related symptoms and develop stress management coping skills.
• Assess for positive and negative sources of social support: personal involvement that will help or hinder making an informed decision and taking steps for successful work entry. This should include identifying sources of emotional and practical support, personal conflict, and persons who are encouraging (and discouraging) of work efforts.

Financial/Legal

• Identify clients’ current benefits and other income sources. Then determine the impact that increased work activity or income will have on these benefits.
• Help clients to understand the range of legal definitions of “disability” at the federal, state, local, and private insurance levels and the implications of these definitions for increasing their work activities. (e.g., under a client’s current insurance policy, is s/he permitted to experiment with returning to work without permanently jeopardizing disability coverage? Does a client risk triggering a disability review if s/he experiments with returning to work?)
• Help clients conduct a risk-benefit analysis to determine the financial feasibility of increasing work activity or remaining outside of the workforce.
• Help clients to understand the potentially negative impact of physicians’ statements to insurers.
• Help clients to understand the ongoing need to document HIV-related symptoms in their charts, and encourage them to discuss these issues with their physicians and other providers.
• Help clients deal with the emotional discrepancies of continuing to report disability issues to medical personnel and benefit sources, while focusing on abilities and positive achievements.
• Help clients to understand their legal rights under the ADA, as well as other relevant legislation, and ways to successfully apply these rights.

Vocational

• A clear understanding of the benefits of vocational and career counseling is important in developing a coordinated treatment plan for HIV-infected clients who are considering work. Psychologists must learn to work effectively with vocational professionals in order to coordinate care.
• Within the scope of their training, psychologists may include a general vocational assessment within a multi-factorial approach, or they may wish to refer clients to vocational specialists.

Work-Related Interests and Values

• Introduce the concepts of working within the clients’ interests and values, rather than solely in response to external expectations, expedience, or income needs.
• Help clients to explore patterns of interests and identify continuing values, as well as those that may have changed as a result of their experience living with HIV.
• It may be necessary to help clients in dealing with grief associated with the HIV-related loss of ability to continue to work in previous areas of interest.
• Assess the impact of clients’ physical capacities on specific types of employment that are of interest to the client.
• Help clients to create an understanding of their current baseline physical capacities and explore whether it is possible to increase these capacities by improving psychological or physical health.
• Help clients to trust their perceptions of their abilities and make predictions about their capacities.
• Help clients assess their educational and work history to determine their previous level of vocational functioning.
• Help clients to identify current job-related skills, skill levels, and potential areas for vocational development.
• Help clients to recognize employer needs in the labor market and assess their abilities to meet those needs. By doing this, psychologists are helping clients identify potential barriers to employability and can work with them to find ways to reduce these barriers.
• Support exploration of the work world to find new areas of interest and opportunity.

Potential for Learning New Skills and Building on Existing Aptitudes

• Help clients identify learning abilities, learning difficulties, aptitudes, and achievement levels.
• Help clients connect to vocational rehabilitation or other job skills training programs if necessary.

Nationally, the proportion of people who become disabled by an illness and who then return to work is very small (Schlecter, 1997), whatever the illness, and those with longer periods of disability experience much greater difficulty entering the workforce than those whose disability is shorter lived. In addition to concerns expressed by many with disabilities, people with HIV/AIDS contemplating workforce entry frequently must confront a reversal in thinking. In the face of great uncertainty about their future, people with HIV/AIDS who undertake the task of workforce (re)entry are pioneers. Workforce entry is but one of many aspects of the reversal of thinking that accompanies their health improvement. Assistance from informed psychologists during this process is integral to a successful (re)entry process.

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