Punished for working

Paul MacPhee has a cautionary tale about setting out to find a job.

It’s been three or four years since HIV-positive people like MacPhee began thinking about the possibility of returning to work. Enthusiasm began to grow among those who heard about or began to experience benefits from the protease inhibitors.

Since that time, experience with government bureaucracies and the job market have been sobering. There’s a cadre of people like MacPhee, each with their own story about the tug of war between work, benefits and bureaucracy.

With a two-year life expectancy, MacPhee, 42, went on CPP disability benefits in 1995. At the time, he says, his T-cell count was down to 50, he’d already had several AIDS-related illnesses and he was “primed to have a serious opportunistic infection.”

By April 1999, however, his condition had improved so much that he started to think about returning to work. That’s the good news. In November 1999, he took his first step and followed standard job search advice to network, sending out a package out to all his friends and acquaintances who might have some knowledge of job vacancies.

But the following June, when nothing had come of the networking, he took the step that he later seriously regretted. He told his CPP case manager that he wanted to return to work. MacPhee expected to receive significant help with his job search, but instead his file was flagged and the clock began ticking.

A university graduate who had worked in sales before he became ill, MacPhee approached CPP for vocational rehabilitation services and was referred to a private rehabilitation counsellor (CPP contracts out to private companies). That counsellor essentially told him he was already doing everything that she would have recommended and arranged for a few hours of computer upgrading.

While this was going on, he was given to understand that he had three months to get a job, with the possibility of extensions that would end within the year, at which time he’d face the end of benefits.

Technically, CPP can reconsider a recipient’s eligibility by asking for a medical report whenever it wants, says Matthew Perry of the HIV/AIDS Legal Clinic (Ontario).

“We caution people to be careful about contacting CPP. We’ve had clients who, because they merely requested a package of information about returning to work, were immediately reassessed,” Perry says, adding that CPP’s definition of disability is stricter than Ontario Disability Support Program.

MacPhee worked very hard at looking for a job. He connected with the Employment Action program (a joint initiative of the AIDS Committee Of Toronto and the Toronto People With AIDS Foundation). He was at the ACT offices almost every day, scanning the Internet for jobs and shipping out résumés.

“It is such a competitive work environment. I think things have really changed since I last worked,” MacPhee says. “If you don’t have high-tech skills, then there are so many qualified people going after so few jobs.”

By last November he was beginning to despair.

“I was at the point of thinking I was going to have to start all over again. I’d have to get a job as an administrative assistant or, when I was cut off, just get some job flipping hamburgers.”

As fate would have it, the only job interviews he got were for HIV-related jobs. His résumé listed his extensive volunteer work with AIDS organizations and, in addition to his work history, there was the five year employment gap.

“I often wonder if my age, my HIV status, my orientation – if these things were barriers, if I was facing discrimination or not,” MacPhee says. “I never had it shoved in my face, but I wonder.

The story has a happy ending. MacPhee did get a job, an HIV-related one.

But he advises others not to approach CPP if they want to return to work: “You have so much to lose and so little to gain.” Instead, he suggests a confidential service like Employment Action or consulting with experienced benefits counsellors.

MacPhee also sees the whole area of disability benefits and return to work to be one that is ripe for AIDS activism. Existing public and private programs have minimal flexibility for people with any kind of chronic and cyclical disabilities. “It’s all so punitive.”

For more information with CPP, ODSP and return to work issues, contact HALCO (416-340-7790 in Toronto or 1-888-705-8889 for the rest of Ontario), Toronto PWA (416-506-1400) and ACT (416-340-2437).