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The house that June built

Toronto's AIDS hospice navigates through trying times

INTERIM OPTIONS. Executive director Bruce Lawson would like to decrease Casey House's overhead. Credit: (RJ Martin)

In a Toronto Star article previewing this year’s DQ 2006, a drag review raising money for the city’s Casey House Hospice for people with AIDS, the focus was on high camp and the amount of work that went into producing the Old Hollywood-themed fundraiser.

At very end, the article notes that the 2006 version of DQ is “a smaller show than DQs of yore.”

Not surprisingly, then, DQ 2006 raised less than last year: a $75,000 cheque to Casey House, compared to $100,000.

The decline in revenue comes at a time when Casey House — located on Huntley St, on the edge of Toronto’s gay village — is at a crossroads. Not only has it had uncharacteristically tumultuous times with its senior staff — its chief financial officer position has been vacant since last winter — but is also grappling with its role, now that people with HIV/AIDS are living longer, healthier lives.

The quintessential client profile upon which Casey House was founded in 1988 — socially stigmatized gay men who can’t find acceptance or care elsewhere and need some TLC as they face a death sentence — has profoundly changed.

“We used to be in the palliative care business,” says board chair Jaime Watt. “We tended to residents’ emotional and spiritual needs, since there was nothing we could do for them medically. But now, for 85 percent of our clients, we are in the supportive care business. We help them to manage the disease, and we provide more hands-on nursing and medical care.”

With changing demands, the question is how Casey House, still seen as a world leader in HIV/AIDS care, is changing itself to meet them.

Let’s start with the dollars. At the end of March, 2006, Casey House reported total annual revenue of $5.75 million, up from $5.65 million in 2005, mostly due to an increase in provincial grants and Community Care Access Centre billings. But expenditures were also up, by about $175,000, so the 2006 deficit was $77,397, compared to just $1,541 a year earlier. (Back in 2004, Casey House finished the year with excess revenue of $103,778.)

For rough comparison: the Toronto People With AIDS Foundation, which provides financial, employment and other services to about 5,2000 people living with HIV/AIDS, reported revenue of just under $2 million in 2005, while the AIDS Committee Of Toronto, which runs prevention campaigns, does research and also provides services to people living with HIV/AIDS, reported revenue of about $3.1 million in 2004/’05.

While the hospice is primarily funded through an annual grant from the provincial Ministry Of Health And Long-term Care ($4.26 million in 2006), all other services are funded through donations obtained by the Casey House Foundation, which pays for capital and operational expenses not covered by other sources.

How much of that is goingto actual services and programs? About 40 cents of every dollar raised goes to administration and other expenses, says Casey House Foundation interim executive director Bruce Lawson.

“I’d like that number to be lower, but I’m told that we’re doing okay for an organization our size,” says Lawson.

The US-based National Center For Charitable Statistics, run by The American Institute Of Philanthropy, sets minimum standard at 60 percent for money spent on programs by nonprofits. Revenue Canada requires that charities keep administration separate from programs, to prove that at least 80 percent of receipted income was spent on programs — in Casey House’s situation, that would only apply to the foundation money, not the government money.

Lawson would like to decrease the percentage of money spent on overhead. But how will he go about lowering that percentage? Not cutbacks. “By raising more money. By increasing our targets.”

As part of Casey House’s attempt to raise more money, its foundation took part for the very first time in a pledge-based fundraising event, the Hike For Hospice, held in May at Riverdale Park, part of a national initiative of the Canadian Hospice Palliative Care Association, now in its third year in Toronto.

Casey House raised just over $20,000 at Hike For Hospice, a good first effort but it doesn’t make up the difference from the DQ fundraiser.

Casey House is probably best known for being a “place,” immortalized in the painting of former resident George MacIntyre. The hospice itself includes 12 long-term beds and one short-term bed. But its Community Program, launched in 1992, offers home hospice care, allowing more people to receive care outside of the physical location. In home settings, nurses care for more than 100 clients, says Joan Lesmond, the hospice’s chief nursing executive. There are a total of 45 nurses on staff.

In-house there are three nurses for every resident. According to a case study done by the New York-based Center To Advance Palliative Care Of The Inpatient Care Center At San Diego Hospice, the average daytime ratio is one nurse for every four patients. At night, the average ratio is one nurse for every six patients.

Lesmond defends Casey House’s ratio.

“Even if clients are not dying, there are still complexities in caring for them,” she says. Those complexities may include the practical, such as making sure patients stick to medication schedules, as well as the more holistic, such as massage therapy and spiritual counselling.

In the Community Program, the ratio is one nurse for every 25 to 30 clients — not every client is seen every day. But this figure also varies somewhat from industry averages. For example, in 2004 the Visiting Nurse Service Of New York, the largest not-for-profit home healthcare agency in the US, employs one registered nurse for every 47 patients.

The Community Program, which has only increased in popularity, has, in turn, affected Casey House’s waiting list. Now, with more people opting for home care, the waiting list for beds is much shorter than it used to be. This spring, for example, there was only one person on that list.

It is possible to imagine a time soon, when Casey House might have empty beds.

While AIDS continues to be prevalent among gay and bisexual men, other populations have shown sharp increases in infection rates. That has altered the makeup of Casey House’s client base.

Still, while the rate of infection is rising faster in other client bases, such as intravenous drug users and heterosexual women, Watt points out that the virus is still infecting more gay men than anyone else. Watt says the tone of the place reflects that.

“It’s still a pretty gay place,” Watt says with a laugh. “A big chunk of the leadership is gay, as are volunteers. Casey House still has a gay ethos.”

An ethos is defined by the people in an institution and, for the better part of a year, Casey House went without a chief financial officer (CFO).

It hired its first one, Dan Dempster, in March of last year. But Dempster left after only eight months on the job. The position remained vacant until June, when it was filled by Catherine Adam — but only on an interim basis.

“It’s fair to say that it was just not a good match,” says Watt of Dempster. “He came from a palliative care background, and we are not just that anymore. The differences were more real than apparent, and we soon realized that it was not a good fit for him or for us. I would have preferred it worked out, but in the end, this was for the best.”

Also, the foundation’s former executive director, Jim Bratton, was recruited away to another job last year. Lawson, a former board member has stepped in. He says the length of the term of his position is indefinite and at the discretion of the board.

Despite these struggles, Casey House is taking steps to keep itself relevant. Lesmond says discussions have begun about creating a day centre at Casey House since 70 percent of clients have said that they would be apt to use such a centre.

But even this presents challenges. “We don’t have physical space for it,” says Lawson. “But we are looking at how to do it.”

Casey House has also turned to partnering with other organizations in order to better serve the disease’s shifting demographic.

Constant reevaluation and adaptation is exactly what Casey House should be doing, says Larry Librack, a physician with the Temmy Latner Centre For Palliative Care at Mount Sinai Hospital and one of Casey House’s original board members.

“The future is home-based care,” says Librack. “As wonderful as Casey House is, most people want to be at home.”

Despite Casey House’s growing pains, Librack praises the work Casey House continues to do.

“I think they set out to do a job and they are doing it marvelously,” he says. “Yes, they are having some administrative troubles, but they continue to show leadership in the area of care for people with AIDS. Knowing that they are involved means that everything is being taken care of.”

He’s also encouraged by Casey House’s shrinking waiting list: “It means people are surviving.”

Librack also hopes Casey House will continue as an educational resource for the medical community and government, as well as the public at large.

“Eighteen years ago when Casey House Hospice opened, the death rate from AIDS was staggering. It was a devastating loss of life,” says Casey House founder June Callwood, whose son is the hospice’s namesake and whose friend’s bout with cancer inspired Casey House.

Callwood admits that HIV/ AIDS has changed greatly in the years since. That means changing, not disappearing.

“AIDS isn’t over. Not at all,” says Callwood. “Tragically, Casey House still is necessary.”