No disrespect to the seven dwarfs from the Walt Disney movie "Snow White and the Seven Dwarfs" who merrily sang on their way to work each morning, but going to work may not be the best option for people with HIV who have been on disability. It's not a simple decision. Each person must weigh the pros and the cons of their particular situation individually. Body Positive recently conducted a teleconference with professionals who help people with HIV to make an informed decision concerning whether or not to enter the workforce. The participants are: Mark King (Director of Education and Communication for Aid Atlanta, and creator of the Reconstruction Program that addresses the practical and emotional concerns of PWA's experiencing renewed health); Peter Newman (Co-president of Diversity Services, Inc., an employment service for disabled workers); Per Larson (a financial advisor and advocate for the seriously ill); and Dr. John Weiser (former Medical Director of the HIV center at St. Luke's/Roosevelt Hospital, who is now in private practice).
Body Positive: How does someone make a decision about whether they should return to work? Should they return when they are feeling better? What are the factors that should be considered?
Mark King: They need to make an entire self-assessment on all of those factors that you mentioned. Concerning the emotional factor, they need to examine what they perceive their stress level may be if they return to work, and the practical matters that will affect them regarding the benefits they receive. They need to consider whether their public or private benefits will be endangered by returning to the workplace.
Peter Newman: Also, people need to compare whether it's in their best interest financially to stay on their benefits or return to the work force. This applies to someone who plans to work as a mailroom clerk making $6 an hour to someone who is considering working as an accountant making $30 or $40 an hour.
Per Larson: When we're talking about going back to work, we're talking about an income question -- not an ethical, moral or spiritual question, so conducting a financial assessment should be the first step. It's got all those other dimensions to it, but the decision made needs to make sense financially. I've noticed that many people are making the decision not to return to work.
BP: Is this because they fear losing benefits if they're going back at an income level lower than when they left the work force?
PL: I don't see a lot of people worrying too much about income disparities, but I do see them terribly worried about losing their benefits.
PN: Let's consider New York City's Division of AIDS Services (DAS) and the way it's set up right now. Currently, you can't work without putting your benefits in jeopardy. This is a major issue. What do people do who are not yet sure about what they're able to handle? They ask themselves these questions: Can I go back to work? Can I work three hours a week, or can I work 40 hours a week? How will whatever I decide impact on my receiving housing supplements, food stamps, my health insurance and my subsidy? Sometimes the answer to these questions depends on the particular program on which they rely.
BP: Are you talking about programs like the AIDS Drug Assistance Program (ADAP)?
PN: ADAP is another story altogether, as is Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). These scenarios all need to be thoroughly investigated. People on these programs need to find out how many hours they can work. If they are on SSDI, have they worked their nine months yet?
MK: These points that you're mentioning cannot be underestimated. There are enormous roadblocks to people making the back to work transition in practical ways. Government assistance programs like SSI and SSDI are simply not designed for people to make U-turns in the middle of the process -- what was expected to be a disability leading to death process. The process involved in making a U-turn is so incredibly cumbersome that it's enough to put off just about anyone from wanting to make that decision.
BP: We know that the new treatments make it possible for people to return to work, yet at the same time, people need to be able to use their benefits to afford to pay for them. In other words, they may not be able to afford the very thing that's enabling them to return to work.
John Weiser: There's a good chance that if somebody goes off Medicaid, and begins to receive commercial insurance through their employment package, their medical care is going to cost them more due to deductibles and co-payments. They may be used to certain kinds of services that won't be covered at all under their new health plan. Services like mental health may have limited coverage. These things need to be taken into account as new potential costs.
PL: I agree. I had a client today who highlighted a good point, which is that becoming Medicare eligible is a major watershed, especially for middle income people. New Yorkers are able to transition into private medical coverage, which is an extraordinary blessing that people don't have in other states; however, the problem is that this fellow's out-of-pocket costs are skyrocketing to around $6,000 to $7,000 to sustain private insurance.
BP: So he has to have a pretty darn good job.
PL: Well, he's on disability benefits, and this is causing him to consider going back to work so that he can have group benefits that will decease his out-of-pocket expenses.
PN: With ADAP, I think the allowable income cap is $44,000 for a single person, and the form is very simple to fill out. If they meet the eligibility requirements, most people receive it. It's a way to pay for the cost of protease inhibitors.
JW: I want to highlight the distinction between going from Medicaid to commercial insurance as opposed to from ADAP to commercial insurance. If you're leaving Medicaid, almost certainly you're going to pay more for your medical care because, essentially, there is no cost to the patient on Medicaid. ADAP Plus is a bit of a different story because there are some limitations concerning in-patient coverage, and specialty care and procedures. But there's virtually no cost to the patient for HIV-related medication and primary care, while people may incur an additional cost once they're relying on commercial insurance for care pertaining to these areas.
BP: Mark, you talked about conducting a complete self-assessment to determine readiness to return to work. Have you designed a tool, or can you give people some guidelines on how to go about performing a self-assessment?
MK: Yes, we do provide guidelines, and just as a point of clarification, our program is focused on client education for all people experiencing renewed health.
BP: So returning back to work is just a part of the services your Reconstruction Program offers?
MK: True. We also encourage taking a medical assessment yourself -- to compare how you're doing physically prior to returning to work to, let's say, the possibility of working a 40-hour week. This comparison is made because many people who experience renewed health sleep until 10 a.m., get up, have a nice breakfast, go to the gym, take a nap in the middle of the day, and feel great for the rest of the evening.
And you know what? So would I if I could have that schedule. They need to take a look hard at themselves that way. Something that I learned from Per is to journal exactly how you are feeling physically every day, and not to shy away from recording the negative maladies you may experience.
In other words, you don't want to have everything be rosy every time you speak to your doctor. The fact is that you may be setting yourself up for difficulties with any disability companies that might be paying you. They may consider you to be in perfect health based on what you're telling your doctor. You need to make sure that you are documenting every bout of diarrhea, every bout of fatigue. We don't recommend this to discourage our clients; we just want them to take a realistic look at how they are doing physically, and to write down how they are doing on a daily basis.
BP: So they should document their whole day, including all the activities in which they were engaged?
MK: Yes, what activities to what exertion level. How many hours a day are they actually being active as opposed to taking naps or sleeping late or resting. They should also take a look at their emotional state. The number one thing that comes up when clients say they're hesitant to return to work is their stress levels. Many of these cases involve people who were highly active professionals who do not want to get back into the rat race again. If they do return to work, they want less responsibility. Yet, getting less responsibility means less money. Are they willing to deal with what that means in a practical way?
PN: One of the programs offered by Diversity Services is temporary staffing. We offer it because people who have not been to work in one year, two years, five years, whatever it might be, can't forecast what going back to work for 35 to 40 hours a week will be like. Through temporary employment, someone can work two days a week, 10 hours a week, whatever it might be, to test the waters. How does this fit into my schedule? How do I feel when coming home at night? Am I able to get a good night's sleep? Can I wake up and take my medication on time? How do I feel at work when I take my medication? Do I need 15 minutes after lunch to just kick off my shoes for a few moments? So temporary employment is a wonderful option for this population.
BP: So temporary employment is a way to discover the actual effect on their physical and emotional health?
PN: Exactly. Plus, they're not obligated at that point. They've not been put through some big interview process where they've had to out themselves, so to speak. They're a temporary employee, and for them it's an evaluation process.
From the employer's perspective, they need work done, and this employee can do this work. So, the employee sees how it goes over the next few weeks. If the employee decides that this is the route to take, then Diversity tries to find them more work, and eventually a full-time position. It's a gradual process. Only a few people have been thrown right into the lion's den of 40 hours a week without having some practice first.
PL: That's why I hook up people who have been on disability with a career counselor who is trained to understand their special needs. For a long time, I have considered being on disability to be a full-time job. It's another career. If people cease looking at work as jobs, and start looking at it as careers, they catch on very quickly to the idea that they've just left one career that provided an income to another career called taking care of themselves. People on disability have an incredible schedule that can be every bit as complicated as executives that I know. They've just changed the nature of their work.
BP: Is this discussion that we've been having about negotiations and returning to former careers primarily about white-collar employment, or do these factors and recommendations apply to working class employment, including physical labor also?
PL: I think it applies much less to working class people, but the career concept does still apply. The problem is that most working class people are not taught to think of work in terms of career. They think in terms of jobs.
BP: What would you recommend for someone who is a construction worker or doing something similar?
JW: They should get a functional assessment to help determine their physical and emotional readiness to going back to work.
BP: Do you have any objective criteria that you use?
JW: Well, an over-reliance on objective criteria like CD4 count and viral load may not really be valid predictors of functional capacity -- readiness for the physical and emotional stresses of work. What is their energy level? What is their nutritional status? Are they having even minor opportunistic infections? What's their mental health? Are they having medication side effects? CD4 count and viral load are powerful predictors of prognosis, which does have some impact on a person's success at returning to work. But I think we all know that people can be in categories with very low (CD4 counts and high viral loads) and still be pretty asymptomatic.
BP: What about women, particularly those with children. Through welfare reform, women are being pressured to leave the public welfare roles and enter the job market, usually in menial and low-paying positions. Do you see problems specific to these women who are planning to go to work? Are the jobs out there? Is daycare available and affordable?
MK: Initially, our audience was mainly gay, white males in white-collar situations who had access to career counselors and similar professional services. We are now getting many more people of color and women with children. One-third of our last seminar audience were these groups. Yes, their situations are more complicated because they will require jobs that offer child care or pay well enough for them to be able to afford it. And for many of them, returning to work is a misnomer. Some will be entering the work force for the first time, or some are considering returning to work only inasmuch as it may be able to improve their benefits package.
PN: This is an issue that we deal with every day, and we have different approaches to deal with it, like working in split shifts. And, yes, child care is very important. We work out split shift situations with many companies, and in some cases there are facilities available at which parents can drop off their kids. We have worked out this type of arrangement for women and men. Although it's not necessarily our responsibility, we make every effort to secure proper child care for children so that a person can regularly meet their work responsibilities. Some of the companies with which we work also have childcare facilities for emergency purposes.
PL: The common theme that seems to be emerging is that the benefits part of the employment package is really becoming more important.
BP: More important than the take-home pay?
PL: Yes, and people on the fringe of society, people who are sick, people who are minorities, people of different sexual orientation are the ones who seem to stimulate these new trends first. This is definitely true of people with life-threatening illness and lower income. People with life-threatening illness had to completely rely on their job as a source of income and nothing else. Now, due to the extent and longevity of illnesses in this group, the benefits part of the employment package is probably more important. People appear to be growing disenchanted with public programs and the kind of care they are getting. In response, they're looking for the private care.
BP: I have heard that many employers are cutting benefits packages. Is this true or just rumor? Are employers providing good benefits programs that meet the needs of people with HIV and AIDS?
PL: What we've seen is the explosion of menial jobs that offer poor benefits in general, and intense pressure on middle-income people and the jobs they hold. Jobs for middle-income workers have not increased much. It's a tough situation, but with the great labor shortages that we've been facing, I don't see any further attacks on benefits by American employers, especially big employers.
PN: In fact, that issue has been brought up a number of times recently because, in many ways, companies are offering more benefits these days to attract the best possible candidates for positions across the board. Companies are offering many attractive packages to attract upper, middle, and even lower level positions. It's important to get a great executive receptionist or a great word processing candidate who's looking for some longevity. Actually, it depends on the company. The Fortune 500 companies are wonderful these days. Also, many insurance companies and banks are wonderful for bringing people back into the work force. They're offering great packages.
PL: What we're seeing with this growing importance of the Fortune 500 companies is a great split now between the rural and urban areas. Rural areas that do not have multinational or big Fortune 500 company employers are seeing their benefit packages getting much worse.
BP: Let's talk about disclosure issues.
MK: One of the first things that the client is going to have to decide for themselves is, are they going to know about my HIV status or not? In some ways, if they're going to know, the interview process is going to be much easier because many clients don't want to work for a company that doesn't know and wouldn't understand. This narrows down their field right away concerning jobs for which they will apply. In this scenario, the application process would be less stressful because they know they're applying within a company that will be understanding.
Let's take a look at disclosure and the Americans with Disabilities Act (ADA). Although we know that the ADA is a powerful law, and it now covers people who are simply HIV-positive, the practical fact in my experience is that clients don't trust the law any further than they can throw it. They believe that their employer would somehow find a way to get rid of them if their AIDS status is discovered. Even though we educate people about their rights under the ADA, they would just as soon let somebody else fight that battle. They just want a damn job.
PN: We have a major issue here. Somebody has a résumé. They stopped work in 1990. They throw that résumé into the world to get an interview. The recruiter will say, "Where have you been for five years?" That gap in the résumé is a red flag, of course. The person who says, "Well I haven't been the Executive Vice President of General Motors because I worked at Aunt Minnie's soda shop for five years," is not going to fly too well. "I took a sabbatical," usually will not fly too well either. So, you have a situation where you're disclosing something without actually disclosing it just by the mere fact of a piece of paper. That is one reason why we are advocates for temporary employment. We get the person in there, and it's about what the person can do and not where they've been.
BP: Do you have many people whom you get companies to hire as temps who later get hired by the company?
PN: We have about an 18 percent temporary-to-permanent hire rate. The national average is about 6 to 8 percent. Our average is about three times that.
BP: They've proven themselves on the job so the holes in the résumé take on less importance?
PN: They take on no importance at that point. They're already on the job, and hopefully, are doing a good job. It's about your abilities, not your disability.
MK: However, once they are full-time there are a couple of things that are going to come up, and I'm interested in what your [Peter's] experience has been in handling these situations. One is having to disclose to somebody because they need some sort of accommodation due to doctor appointments, or other health-related needs. Second, what is their level of confidence that the law is going to protect them and they're not going to be discriminated against, although I have a feeling that you are working with employers who are probably already sympathetic. Is that true?
PN: Yes. The companies that are working with us are already sympathetic.
BP: Does the temp-to-perm situation only work for people in certain types of occupations?
PN: We work with people in maintenance facilities doing stockroom work, or janitorial work as well as executive directors for nonprofit agencies. We do everything from the mailroom to the boardroom. The bulk of our business is office support, but we do everything. If we have a viable candidate for a position, we will recruit for that candidate.
PL: Let me take a different tack, if I might. According to most studies in the field and my experience, most people do not disclose.
BP: Are you saying that they don't disclose to the employer at all or that they don't disclose on the job?
PL: They don't disclose prior to getting the job, and in my experience with my clients, they don't disclose on the job if they can help it. If they are forced to, then they do. Now let's look at the implications of this. We talked about using a temporary job as a way of getting the foot in the door without having to go through a potentially stressful and non-productive interview process. However, with proper training for interview candidates, it is possible to deal with a five-year gap on a résumé. Take the focus off of the past and put it on the present job and the future performance on that job. Ultimately, that's really the task that anyone faces -- disability or no disability -- in any employment interview.
The natural tendency of employment interviewers is to focus on the past. It always derails people. Usually, the best response to getting that kind of approach is to say, "I had a five-year period in which I didn't work, but let's focus on the job that needs to be done and my qualifications to do it." You acknowledge the fact; there's no hiding it. If there's an elephant in the living room, you need to call the elephant by name. Once you do so, often it diffuses the issue. But, on a practical basis, you're not going to get the interview if you do disclose. It truly is not relevant to the employer.
PN: One of the problems with this issue is the stress level that people go through trying to deal with all of these things in an interview process, then waiting for that phone call to learn what's going to happen, and then getting rejected and trying to go through the whole process again and again. There's a very high rate of non-fulfillment with the job. People have gone on many interviews and not secured any jobs. That's when they've come into our door. I'm not saying that they don't get jobs, they often do, but the stress level is extremely high in preparing yourself.
MK: Most of my clients would rather not disclose. They want the job so they choose not to disclose. They'll deal with their HIV later. Also, the interview training that was mentioned earlier has to be really good training. You (Per) and Betty Kohlenberg out in California have done a lot of work on trying to deflect those questions about the gap in the résumé. But you know what? At the end of the day, that supervisor is still looking at a gap in the résumé.
BP: Well then, what does someone say when asked, "Where were you for five years?"
MK: We have a number of different suggestions. You can identify the fact that the gap exists and quickly move on. We suggest that clients take a look at what they have been doing in those four years. They haven't been sitting on the couch watching Oprah for four years straight. They have been active. They did volunteer work. They helped a dying friend or a relative. They decided to get into landscaping, which has always been their dream. But now they realize that the workplace is where they really need to be, and they look forward to getting to know and work along with people again. Tell the potential employer, "That's why I'm so interested in this position." You bring it right back to that job. You're pulling focus from the truth.
PN: If you don't disclose, you do get the job, and you've camouflaged all the way, the day may suddenly come when you have to say to the recruiter or the human resources department, "Look, I need some accommodations. I need to take 15 minutes after lunch, and I need to take this, and I need to go to doctor's appointments, and blah, blah, blah." The recruiter feels that the wool was pulled over his or her eyes. The company may feel that they are now stuck with this person who has the ADA behind them.
BP: So you're saying that he might wind up okay, more or less on the job, but that the prospects for other people would be harmed?
PN: Yes. It does taint it for the recruiter at that point who may feel that they should have picked up the signs that this person had a disability, that they are HIV-positive. They will never let this happen again because it's changed their company insurance structure, what they have to do for accommodations.
MK: Even the healthiest person with AIDS who doesn't anticipate having to disclose in any way and doesn't feel the need to ask for accommodation, is still going to be sneaking off to the bathroom several times a day to take a handful of pills, and will have to work their lunches and their meals around certain things. This sort of avoidance is going to be heavily stressful.
PN: But there are people out there who have to take an insulin shot in the middle of the day, and those who have to take other medications.
MK: But they can say, oh, this is insulin.
PN: Yes, it's easier by simply telling what they're doing.
MK: We're dealing with people's impressions of a person with a disability. They take it to the worst possible level. People only have a minimal understanding of the ADA.
BP: They're focusing on the idea of accommodation rather than on the word reasonable.
PN: Right. Typically, reasonable accommodations cost under $50, or it's just a matter of taking 15 minutes. Most hear the word accommodation and assume they're going to have to reconfigure their entire work space -- change the elevators and the bathrooms and everything else in their work space when that is not even an issue. We had a temporary placement who had HIV and cancer, who was undergoing chemotherapy and worked a 40-hour week. This person worked four days, took Friday off for chemotherapy, and was back at work on Monday. He was the best employee they ever had.
MK: I'd like to introduce a reality check regarding disclosure for people who live in rural areas. To put it simply, they can't consider disclosing at anytime -- before or after that job interview -- because they know for a fact that they will be out the door. They know that ADA or no ADA, somehow, they will be released from that job due to the ignorance and stigma that exists concerning HIV in rural areas.
BP: In these rural areas where everybody knows everybody else, isn't it more likely that people are already going to know that somebody has AIDS because they know the person and the family?
MK: Perhaps, but not necessarily.
BP: What about disclosure to co-workers? Does that raise a lot of problems?
PN: We've had issues with that here in New York City. Someone was working at one of the largest museums in the world, and disclosed to another employee who ran to human resources. The human resource department literally freaked and found it necessary to find a reason to terminate our employee. This all happened because the people involved were not educated about HIV and AIDS. This is a problem. You never know whether a person is educated about and sensitive to people who are HIV-positive.
PL: Yes, disclosure to fellow employees is always a bombshell issue due to people's mixed emotions. It's tough enough getting an employer to understand. I always advise my clients never to unnecessarily disclose to fellow employees.
BP: What about the effects of this process on a person's physical health? We've always heard that stress compromises the immune system.
JW: It seems intuitive that stress has a negative effect on health. As far as I know, there hasn't been good documentation on the topic. From an anecdotal standpoint, emotional stress exacerbates HIV infections and further complicates the immune system. Another issue that hasn't been explored in our discussion concerns certain types of employment that may increase risk of exposure to certain opportunistic pathogens. For instance, the risk of exposure to tuberculosis is increased by working in a health care facility or correctional institution or shelters for the homeless. The decision about going back to work in such a facility should be made in conjunction with a health care worker and should take into consideration what the employee's specific duties are, the prevalence of tuberculosis in their community, and the degree to which precautions are taken to prevent the transmission of tuberculosis in the workplace. People who are child care providers are at an increased risk for parasitic infections like Giardia, Cryptosporidium, and Hepatitis A. Risk of getting these infections can be reduced by practicing good hygiene like hand washing after fecal contact. Occupations that involve contact with animals, like veterinary work or working in a pet store or a farm may increase the risk of exposure to Cryptosporidium or Toxoplasma and bacterial infections like Salmonella and Campylobacter. If a person chooses to work in these settings, good hygiene is important, and it is probably a good idea for someone with HIV not to handle young animals, particularly animals with diarrhea.
PL: I agree with John. My airline stewards, universally, are not returning to all the stresses of travel, especially travel to foreign countries.
PN: We have contracts with hospitals that provide a number of tests before an employee gets placed in a hospital setting, one being a TB test. Transmissions go two ways -- giving and receiving. We try to take the precautions. We need to stress to people exactly what type of environment they are entering and if it will compromise them in any way. We don't want to put anybody at risk.
JW: Another point I'd like to make concerns continuity of care. Someone going back to work and changing insurance coverage needs to take into consideration whether they can continue to see their previous providers, whether they participate in whatever health plan they'll be using. It can result in relationships being severed, not just with physicians but with social workers and all health providers and dietitians. Also, are the providers whom they're going to be seeing available at hours when they're able to get to their offices? In other words, they may need to make sure that their providers have extended hours.
PN: This is a major issue because of many of the companies that we're sending people to have HMOs that nobody wants. This is another issue.
JW: Also, these issues are compounded for parents who are returning to work. Accessing health care is more complicated for them. If a mother with children has to go for her medical care, plus her children's medical care, plus gynecology, the difficulties are compounded. Time restrictions become a limitation to successful health care.
BP: Can you identify the community resources that are most needed to help people who are considering returning to work or who have already returned? Perhaps, organizations and businesses need AIDS in the workplace training?
PL: One thing I've always wished for would be to retrain career counseling groups, especially the ones that are affiliated with universities, about the special needs of people with disabilities -- and to get them to understand that career needs don't end when people go out on disability. I've been able to do this with one career center in New York. The results have been extremely satisfying.
MK: As service providers I wish that we had better relationships with state vocational rehabilitation people. They certainly haven't been well trained on HIV/AIDS issues. There hasn't been much cause for it in years past. Only now are we seeing the value of that relationship.
BP: Are people with AIDS now going into vocational rehabilitation programs in great numbers?
MK: No, not in great numbers. In this particular state there hasn't been a strong relationship between AIDS service providers and vocational rehabilitation. There is a real need for rehabs to be brought up to speed on those sorts of issues.
PL: I totally agree. I had a client just a week ago in Pennsylvania who was an obvious candidate for an education -- for retraining. In New York, we have fairly good resources. There's a state program to do this in every state. It took me and this client over a week to find the agency in Pennsylvania that could pay for his tuition. None of the AIDS organizations had the foggiest idea that this agency existed.
PN: We work closely with the Actors Work Program. The Actors Work Program is part of Actors Equity and the Actors Fund where they work to retrain people in the theater who are HIV-positive into other careers, usually computer-oriented careers. We handle the assessments and placements for them. It's a wonderful program. It works, but it's a privately run program. It's not funded.
MK: The work that we're doing is important in laying significant groundwork for the day in which there will be more of a mass pilgrimage to the work place. This process needs to be handled with such great caution and care. I don't want to discourage anyone from doing something that would be best for them, but I want to make sure that it is in fact the right move for them.
Here are the contact numbers for the services represented by the participants in the teleconference: The Reconstruction Program (404) 872-0600; Diversity Services (212) 685-9304, and Per Larson & Associates (914) 534-9642.
Back to the September 1998 Issue of Body Positive Magazine.