Friday, April 8, 2011

HIV Employment Roundtable

On Friday, April 8th, U.S. Department of Labor Secretary Hilda Solis and DOL's Office of Disability Employment Policy ("ODEP") Assistant Secretary Kathy Martinez hosted an HIV Employment Roundtable. This Roundtable brought together a cross-section of government agency representatives, HIV/AIDS service providers, employers, researchers, advocates, and members of the HIV/AIDS community to discuss improving employment for people living with HIV/AIDS. Among the invitees were the ADAP Advocacy Association's CEO Brandon M. Macsata, as well as Board Members Anthony Jackson, community member, and Crosby Cromwell, Senior Manager - Constituent Relations for Walmart.


Among the invitees asked to share their personal stories was Mark Fischer of Washington, DC. Below is Mark's moving testimony:

Comments of Mark S. Fischer
U. S. DEPARTMENT OF LABOR – HIV/AIDS EMPLOYMENT ROUNDTABLE
Convened by Secretary Hilda Solis – April 8, 2011

I appreciate the invitation to speak to today and thank Secretary Solis and her staff for initiating this valuable HIV/AIDS Employment Roundtable that advances a much needed national dialog.

While my remarks today draw on my personal experience, I hope they will reveal a much larger, often unseen, picture and lead to action that meets crucial needs of those who cannot advocate for themselves.

Preparing these remarks has forced me to take a journey of recollection and reflection that has proven both painful and revealing for me.

Ten years ago last month, at the age of 51, I was forced out of a career position that represented the achievements of a lifetime of effort. While I have acquired a necessary sense of acceptance and done my best to move on, not a day goes by that I do not wish I could regain what was taken from me on that day . . . the financial independence, the sense of purpose, and the feeling of accomplishment that my job once gave me.

To put my loss in perspective, allow me to share a little about where I came from and how much I had managed to accomplish prior to losing my job.

I am a child of the great American immigrant experience whose ancestors arrived in the United States is a little over a century ago.

The first generation, my grandparents, were minimally educated. They supported themselves and their children through manual labor and the trades.

The second generation, my parents, both graduated high school. My mother also graduated from business college. My father worked in construction and my mother in business both before my I was born and after both my sister and I began attending school.

In the third generation, I was the first born on both sides of the family. Based on income, my family would be called low-income, working-class. What we lacked financially was more than made up by very devoted parents and high standards. We never wanted for food, clothing or shelter but luxury and waste were not possible. I began mowing lawns to earn spending money at age 12. I always had summer jobs and worked part time throughout college.

Education was stressed as the key to a better future. I attended high quality public schools in a working class neighborhood. Academically, I ranked in the top ten of a class of nearly 600, and achieved success as class president, newspaper editor, and the like. I earned early acceptance and need-based financial aid at Duke University where I received my Bachelor’s and Master’s degrees. To pay for graduate school, I taught school full time while attending classes at night and during the summer.

Over the next 30 years in the workforce, I worked whatever hours were needed to get the job done, showed initiative, took personal responsibility and, in return, regularly received praise, raises and promotions. My job and doing it well were a key part of who I was and how I saw myself. They gave me reason to envision a good future.

In 1998, I accepted a new position with the convention, meeting and special events firm where for ten years I had been a key player in creating major growth that transformed the company from a local small business to an enterprise with national operations serving top-rung clients from across the nation and around the world. As Director of Creative Services, I became the “hub” for company success, efficiency and profitability. I created program concept, designed proposal formats, developed specific components, selected suppliers, negotiated costs, established operating logistics, set selling prices and managed profitability. I felt that I finally had “the perfect job” based upon my interests, skills and experience. For the first year, I got glowing reviews and praise for my efforts. I was often required to work late to meet deadlines agreed to by others without my prior consent but I loved the work and I loved the success.

In 1999, the company President supported by the company owner began to make an issue of the fact that I was not at work promptly at 9:00 AM every day. The late hours I was forced to keep behalf of the company, my health needs and the side effects of my HIV meds, all known to them, did not seem to matter.

Near the end of 1999, I was unable to make an early morning departure to be a part of an out-of-town client presentation that was rescheduled at the last minute. Reaction was extremely negative and totally lacked any understanding of my health constraints. From there, my relationship with my two superiors deteriorated. The staff seemed to adopt a negative view of me that I believe was fed by my superiors. My work quality did not decline but the nitpicking and misrepresentation of facts grew. The strain on me was persistent and draining.

In early 2000, I missed four solid weeks of work as a result of physical and mental exhaustion caused by over a year of fighting to stay employed so I could meet my financial obligations and support my disabled partner.

Upon my return to work, despite the fact that I was 15 pounds lighter and noticeably pale, I was handed a 30-day to-do-list that was humanly impossible to fulfill. I was subjected to the supervision of a new part-time HR specialist who supervised nobody else, was re-evaluated using false information, and was called into an adversarial meeting with the company attorney, the owner, president and HR specialist without any prior notice.

Exactly 30 days after my return, shortly after the close of business, I was asked to meet with the owner and the attorney, again without prior notice. When I said that was not possible, they came into my office, verbally notified me of my termination, and told me to vacate my office immediately. They wanted me to leave without any of my belonging but I insisted on taking them with me. They had hired a security guard to escort me out. So, in about one hour, I packed up and left. By the time I got home, my voicemail message had been changed, my email account had been deleted and I no longer existed at that company.

I was offered the opportunity to receive three month’s severance pay and health insurance but only if I would sign a severance agreement that totally absolved the company and all staff any wrongdoing and relinquished all my rights to any legal recourse.

While the “official” reason for my termination was “reorganization”, plenty of undocumentable evidence pointed to the real reason . . . my health. I had been told that the premiums for my health coverage were extremely high, that younger people could be hired for less money, and more. It had been made clear that the realities of living with HIV were totally unrecognized or unimportant known to my superiors.

I eventually signed the separation agreement because I was exhausted and was advised by numerous credible sources that chances of successful recourse through EEOC or the courts were practically non-existent and would prove emotionally and financially devastating.

In a sad post script, the company that I helped to build and to triple its multi-million dollar revenues over a 12-year period failed and closed its doors within two years of my departure. While that reinforces my sense of self-worth, it does absolutely nothing to fill the void left by the loss of my career.

Then, and even sometimes now, that termination feels as if a major limb, perhaps two, was amputated from my body.

On the night I was terminated, my initial reasoned reaction to the loss of my job was that I would simply get another job.

However, by the next morning, exhaustion and anxiety set in. Soon, the massive challenge of mere financial survival pushed the job search out of the picture on a day-to-day basis.

Unbeknownst to me, between November 2000 and March 2001, my t-cell count had dropped from the high 300’s to 75.

I steadfastly resisted the idea that I should file for disability retirement but eventually was persuaded to do so only to be denied by Social Security.

I used up my 401K and profit sharing to pay bills.

In the end, I was forced to sell my house to avoid foreclosure and loss of my equity.

Just days after moving out of the house, I was diagnosed and hospitalized with pneumocystis carnii pneumonia . . . which was a blessing in disguise because it qualified me for SSDI.

However, while waiting for SSDI benefits to begin and even longer for Medicare eligibility, I consumed the profit from the sale of the house.

The total period required to secure disability income and establish full financial security took nearly five years. That included qualifying, being approved for, satisfying the waiting period, clearing the waiting list, or whatever else may be required for SSDI, Medicare, ADAP, TBRA (rent subsidy). Securing those essential support services is a massively time consuming endeavor that leaves time for little else.

Along the way, I made frustrating and futile attempts to use a vocational rehab system that is ill suited to the needs of a skilled experienced professional attempting to make an emotionally challenging career change.

I am now financially stable but that stability is totally dependent on external sources. My independent resources were totally depleted trying to survive the unjust separation from my job and its considerable aftermath.

I am a part of the first generation of HIV-infected people. I have no way of knowing what lies ahead. I am caught between my dreams and aspirations on one hand and a potentially grim and challenging future on the other. I want a job and all that comes with it. However, to maintain my health, I need certainty and stability more. Many people are shocked that I survived the challenges of the last ten years. I doubt that I could survive if I went back to work, relinquished my safety net of services, and then had a health crisis that forced me to run that grueling five-year gauntlet again.

For now, I have chosen to devote my considerable experience, ability, compassion, time and energy to helping those less blessed than I. My struggle made me realize that if a person with my education, sense of empowerment and experience often wanted to just give up, those less blessed must be suffering more and getting far less of what they need to survive. That is why I serve as Committee Chair and Executive Committee member of the Ryan White Planning Council for the Metropolitan Washington, DC EMA, have helped form and serve as the Vice President of Back to the Basics Please, a 501 c 3 devoted to connecting people to a full range of care that includes HIV, substance abuse and mental health regardless of where they live in the US, and support a wide variety of other community outreach programs.

There are no easy answers to my situation and certainly no one-size-fits-all solutions for all people living with HIV.

However, from my personal experience and my work with other People Living With HIV, I offer the following suggestions that I believe would improve the ability of HIV-positive people to retain or regain employment.

For those who are employed but dealing with side effects of HIV infection or HIV medications, the following support for their employment rights and assistance to employers are crucial.
1. EEOC defense of employment rights under ADA including highly publicized resources for assistance with grievances is essential. I applaud the EEOC for its recent commitment to doing so.

2. Availability of resources for employers that include training programs, “best practices” guidelines and accommodation prototypes or examples that will make compliance easier and more common.

3. Access to timely and effective mediation as an alternative to the time-consuming, cost-prohibitive option of taking formal legal action to resolve disputes in the courts will increase continued employment and keep highly competent, productive individuals in the workforce.

For those who have lost employment as a result of HIV-related illness or side effects of HIV medications and seek re-entry into the workforce, the following effective and appropriate resources are essential.

1. Mental health and employment counseling to address any damage that may have resulted from the previous loss of employment, to deal with any negative self-image issues related to being HIV-positive and to promote acceptance of any reduced work ability or career expectations that may exist. This support is crucial to job search and performance success.

2. Vocational rehabilitation counseling and assistance that are appropriate and targeted to the needs the specific HIV-positive person whose dreams and careers have been forcibly re-routed by a disease they never envisioned must be provided to give the individual the plan and the tools with which to move ahead. (My frustrations in this realm are a story that I haven’t the time to tell here.)

3. Employer education and assistance programs that “sell” the merits of hiring experienced competent people living with HIV, the effective ways of accommodating their needs, and allay unjustified employer fears are required to create an accepting environment in which an HIV-positive person can sell his or her attributes instead of having to defend his or her disease.

4. Employment resources for job seekers that include HIV-supportive companies are crucial to guide job seekers toward options that will be informed, respectful and supportive of their needs. While such a resource may not be adequate to meet the employment needs of all HIV-positive people, they will assist many, create success stories and demonstrate that hiring HIV-positive people is good for people, good for business and good for the bottom line.

5. Requalification for essential social services and the support “safety net” needs to be simplified and guaranteed for those who return to work, relinquish benefits and then face a health crisis that makes them unable to work. HIV/AIDS, while increasingly treatable still creates a uncertain and unpredictable path for those living with the disease. Each individual reacts differently to the infection and to treatment. As a result, the support service system needs to adapt to changing realities and in a timely and effective manner.

Those who were summarily separated from the source of their livelihood because their disease was inconvenient to their employer are understandably skeptical about trading financial stability for employment that can be terminated at will thereby repeating the nightmare from the past.

Those who lived in uncertainty and often desperation while they awaited access to essential life supporting services are justifiably anxious about risking access to their hard earned safety net if they return to work, relinquish services and then need them again.

Again, this is a complicated challenge with no easy solutions. I hope my comments will be of use as we seek to move forward. Thank you.

4 comments:

Anonymous said...

I have read your story and i do understand all of these need more people within the workforce to be better educated on this disease,so that they would be able to learn to deal with there employees in there times of dealing with these side effect

Sebastian said...

I would like to applaud Mr. Fischer for presenting his personal experiences and recommendations to address such an important issue for individuals living with HIV. Thank you and please continue doing the great work

Brian said...

I started to well up because of the similarities in my experience with those of Mr. Fischer. My family history is nearly identical with his. I was the first in my family to graduate from college. After working a year at Childrens Hospital. I entered into a PhD at USC. After successfully completing my first year and starting my thesis work I discovered my partners HIV diagnosis in 1990. They gave him 2 years to live. My dreams and career were put on hold because I had to take care of my partner, who during the course of the next 18 years was in the hospital countless times and was near death on 2 occasions. My own diagnosis in 1997 while working for a vacation tour operator brought additional stress/anxiety and at times my coping skills deteriorated to the point where I felt no hope. Again I continued working never fully succeeding in developing a sustainable career path. I work in the medical field now after seeking some help through vocrehab. I worked as a xray tech and MA. I gladly took the jobs I could find, however the pay was never enough to subsist on. With the ever increasing cost of insurance and gas and day to day living expenses and the student loan $5000 to pay off it was still difficult to make ends meet. At my last position at a Sports and Family Medicine practice in St. Petersburg, I had to disclose my status because a patients dirty needle stuck my protected hand. After disclosing my status, things changed dramatically. I was denied certain moneys that was part of my compensation package (an employer contribution of $500 toward my HSA) With insurance my meds had a $2000 per annum deductible for meds and then the payout had a $2000 per year cap not even enough to pay for one month of my meds. I had to seek help from ADAP. I have to seek for samples and /or assistance for depression, anxiety and lifelong allergies and chronic asthma medication from other sources. My manager at my last place of employment the physicians wife seemed ambivalent of my struggle. From the moment I disclosed my stauspoint she was ever threatening that my performance was lacking and kept adding more responsibility The stress became unbearable and I resigned under the pressure, and had to navigate through ADAP and pharmecutical PAP's . I have always been one to work and really want to do so. But with the current state of insurance and the cuts in ADAP funding the fear of denial and rejection in the job have sent me into a severe depression and panic attacks. I have depleted my 401k this year just to survive.

Mr. Fischer's account of his story really resonated with my situation and made me understand that I was not alone, that the prejudice and discrimination are very real and are destroying lives that deserve to be given a chance and given some much needed protections. I would like to add that I would like to help in any way possible to lend a hand or my voice to help those who us who want to work but are finding difficulty due to aging, med side effects and anxiety over disclosing my status. It cripples our hopes and dreams. The right to work in the state of Florida in essence seems to me the right to deny work for any reason, I am slowly trying to navigate the next step and make informed decisions to protect my safety net but would really would prefer to work in an environment where I do not feel threatened that the rug could be pulled out from under me at any moment. Thanks again for sharing your story Mark. Plese don't give up. There is always hope. From a fellow first generation HIV survivor. I have a blog entittled Survive, Strive and Thrive...SURVIVE an HIV diagnosis, STRIVE to overcome fear, prejudice and stigma and THRIVE in life once more.
http://brianviewpoint.blogspot.com/

ynot said...

Thank you, Mr. Fischer for your sharing your experience on Employment discrimination. As I am currently dealing with the loss of my employment, due to reasonable accommodations request I requested from my employer, since then I have been made to feel less than a model employee. It has not been easy, but one thing I have to remind myself is that my health is much more important. Keep advocating for the less fortunate, god bless.