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HEARTS, MINDS & DOORS CASEY HOUSE NEWSLETTER SPRING 2012

Providing exemplary treatment, support and palliative care for people affected by HIV/AIDS, in collaboration with our communities. www.caseyhouse.com

IN THIS ISSUE: Jaime Watt, volunteer & donor

Casey House White Paper Released * The Casey Awards Recipients * SnowBall 2012 A Donor’s View: Jaime Watt * Richard: Not Done With Life * Campaign Update Remembering Trent Frayne * Same Sex Couples & Will Planning * Upcoming Events

FACING THE FUTURE TOGETHER Casey House white paper examines growing need for HIV/AIDS care in Toronto

On December 1, marking World AIDS symptoms and health needs that is Day, Casey House released a white the experience for so many. paper co-authored by Dr. Kevin Notes Casey House CEO Stephanie Gough (Director, Division of Infectious Karapita, “We know that there is Diseases, St Michael’s) and Casey profound and growing need for House CEO Stephanie Karapita. The HIV/AIDS care in our city. Through report generated opinion polling and significant media 1 in 120 adult Torontonians is focus groups, we’ve attention, with also learned that HIV- positive, with care needs coverage across that can be expected to escalate Ontarians feel a great Canada in a deal of compassion as they grow older. variety of media. for people living with Entitled Facing HIV/AIDS, and they the Future Together: An innovative overwhelmingly agree that our system Response to the Urgent HIV/AIDS needs new options to better meet Crisis in Toronto, the report details these care needs. “ new and significant challenges for Casey House recently announced Ontario’s health care system in plans to launch a new Day Health addressing the growing need for Program, to expand its range of HIV/ expanded HIV/AIDS services as the AIDS health care services and to HIV-positive population continues to serve as a model for chronic disease increase in size and complexity. management. To be housed along “The good news is that HIV/AIDS is with Casey House’s other programs in no longer a death sentence,” says Dr. a redeveloped facility that will open Gough. “Today, if people have access at the corner of Jarvis and Isabella to treatment, HIV/AIDS can be more Streets, the Day Health Program will like a chronic disease that waxes provide comprehensive treatment to and wanes in severity throughout meet the complex needs of people their lives. That’s terrific news. But living with HIV/AIDS. we’re seeing that as people age with HIV/AIDS, their health care needs frequently escalate and can become very disabling.” The white paper asserts that as the population of people aging with HIV/AIDS continues to expand, Ontario requires a response to this growing demand for flexible care Read the full white paper online that addresses the rollercoaster of at www.caseyhouse.com

WHITE PAPER HIGHLIGHTS The HIV/AIDS epidemic continues to grow in Ontario • More people live with HIV/AIDS in Toronto than ever before, with 1 in 120 adult Torontonians currently HIVpositive. • The number of people living with HIV/AIDS in Ontario grew by 31 percent from 2003 to 2008 and is continuing to grow. The challenges of HIV/AIDS are growing in complexity for Ontario: • The face of HIV/AIDS is changing: although gay men continue to make up the largest group of people living with the infection, new diagnoses are also happening among women and within the Aboriginal community, as well as for new Canadians. • Deep stigma, poverty and marginalization continue to accompany HIV/AIDS, creating additional barriers to providing effective health care. • The new phenomenon of the “Greying of AIDS” will have widespread impact on health care providers: half of the HIV+ population in Ontario is expected to be older than 50 by 2015, with health care needs escalating as they age. Ontarians remain concerned and compassionate about the health of people living with HIV/AIDS: • Nine out of 10 survey respondents agree that society has a “moral obligation” to provide compassionate treatment to people living with HIV. • Nine out of 10 Ontarians also agree that Ontario needs new options for HIV/AIDS health care services that will reduce hospital stays.


A DONOR’S VIEW:

Jaime Watt

PASSION FOR INNOVATION AND INSPIRATION IN ADVANCING HIV/AIDS CARE AT CASEY HOUSE

Jaime Watt

A donor to Casey House since our founding, Jaime Watt is Executive Chairman and Senior Partner of Navigator Ltd. and a Principal at Ensight Canada. He was the inaugural recipient of Egale’s Lifetime Achievement Award and has been awarded the Queen’s Jubilee medal for service to the community. A former Chair of the Board of Directors, Jaime is today Chair of the Casey House Capital Campaign.

You’ve been making charitable donations to Casey House since we opened our doors 24 years ago. What changes have you observed in that time? In some ways, everything has changed. And yet, nothing has changed. Today, through the advent of the antiretrovirals that have been so wonderfully life-saving for so many, Casey House has shifted its care largely away from helping people die, to helping people to live. That’s an enormous change in what we do. And yet, on the other hand, there is much about Casey House that has not changed at all. We continue to be wedded to our immutable values of compassion and care. We’re still looking after deeply marginalized people, people who have serious life challenges and who, for a variety of reasons, are isolated. We still continue to strive to help the people whom no one else is helping. These aspects of our care will never change. You are a leadership donor to Casey House yourself, giving a very generous gift to the Capital Campaign. What drove your donation? You can’t ask people to give without contributing yourself. By making a leadership gift, a “stretch gift”, you’re demonstrating how strongly you believe in the cause. As I do. What are your thoughts about the new plans taking shape at Casey House? I’m impressed by the courage that it’s taken to transition Casey House from a strictly palliative care hospice to the proud organization that will soon come out of the shadows of Huntley Street and take a prominent place on Jarvis. This project is the result of a highly rigorous, thoughtful process that has required much reflection about how our work has changed, and the changing needs of the people we serve. We did

consider retrofitting our existing building, but it became very evident that this wasn’t an appropriate solution. By creating this new building from scratch, we’ll be able to better address the health care needs of a population that is increasingly ambulatory, more diverse, comprised of both men and women, and with a wide scope of complex health care issues. The new building will ensure that our clients will receive the care that is best suited to their needs. For some, that will continue to mean the inpatient program. For others, it will continue to be palliative care. But many more will benefit from the addition of our new Day Health Program, allowing access to a variety of health care supports not currently available. Why now? HIV/AIDS is no longer in the spotlight. Many people perceive it as over. We know this is far from the truth. So we need to stir up awareness of this cause once again. To demonstrate that the need and the work continue. And to encourage and inspire our generous donors to once again respond.

Remembering Trent Frayne, 1918 - 2012

June Callwood, Casey and Trent Frayne

A candle was lit in the window of Casey House in memory of legendary sports journalist Trent Frayne, husband of Casey House founding volunteer June Callwood. The Casey House community will forever be deeply indebted to Trent and the Frayne family for the tremendous love and support they have shared with us ever since June Callwood and the other founders of Casey House bravely banded together to create a compassionate home for HIV/AIDS care. Casey House was named in memory of Callwood and Frayne’s youngest son Casey, who was killed by a drunk driver in 1982. Their memories will always be honoured here.

www.caseyhouse.com


“I’M NOT DONE WITH MY LIFE YET”

YOU CAN OPEN HEARTS

When Richard was transferred from hospital to Casey House, his weight had plummeted to 92 pounds on his nearly six-foot frame. He had advanced cirrhosis of the liver, the seemingly fatal result of hepatitis B compounded by HIV infection. His decimated immune system had opened his lungs to a terrible infection and his belly was so severely distended with fluid that he was immobilized and in excruciating pain. His children had been told to prepare for his death. “I got used to thinking I would die,” recalls Richard. “I had a lot of time lying in bed to get used to the idea, so I wasn’t really scared, but I was worried about my kids.”

n One-time donation

Renewed health and hope, thanks to knowledge and determination of Casey House multidisciplinary team

At the time of his transfer to Casey House, it seemed certain he would die here. But the interprofessional team—led by Medical Director Dr. Ann Stewart— wasn’t willing to give up on Richard’s life. They conducted careful tests, referred him to specialists, and worked to keep him as comfortable as possible. Volunteers supported Richard to keep him active, escorting him in his wheelchair for short excursions and tempting him with low-salt french fries, the only food he craved in the midst of his terrible pain and nausea. “When you’re told you’re going to die, you don’t want to do anything,” says Richard. “The volunteers, the nurses, some of the other residents who became my friends... they kept me going. But it was a rough time.” Then one day Dr. Stewart came to him with good news: a consulting gastroenterologist had determined how to treat his aggressive liver disease. The prognosis was hopeful.

“Our multidisciplinary team is key to what works so well at Casey House,” comments Dr. Stewart. “At one time, our care was almost exclusively palliative, but today it is much more like acute care medicine, which requires a team approach. We’re seeing many clients with multiple and very serious illnesses, such as hepatitis B or C, as well as diseases that are associated with their longterm medication use or aging with HIV, such as heart disease and kidney disease. On top of all this, many are dealing with issues with mental health and substance use. There can also be cognitive impairment, which can be challenging to identify and treat.“ A research project conducted by Dr. Stewart in collaboration with Dr. Mark Halman of St. Michael’s determined that Casey House residents contend with an average of five significant illnesses layered on top of their HIV disease, requiring a skilled and multifactorial approach to treatment. Today, Richard receives weekly outpatient care at Casey House and is hopeful that his health will eventually become more stable. He’s trying to save money so that when his treatments are finished, he can move closer to his family in Newfoundland. Once there, he plans to buy a small house and earn a living selling handcrafted Mi’kmaq jewelry and leatherwork. “I never would have believed it, but I’m actually planning for my old age now,” says Richard. “I’m not done with my life yet.”

n Monthly donation

n $500 n $250 n $100 n $50 n $25 n $15 n Other $_________ This donation is being made on behalf of: n A business n An individual First Name

Last Name

Address City

Prov

Telephone (Residence)

Postal Code Telephone (Business)

Email n I do not wish to receive correspondence from Casey House. Does your employer match your contributions? n Yes n No n I would like my gift to remain anonymous. n I have remembered Casey House in my will. n Please send me information about legacy gifts.

Credit Card Information n Visa n MasterCard n Amex Card No.

Exp

Cardholder Name Signature (My signature indicates that I have read and understand the disclaimer below) For one-time donations: A charitable tax receipt will automatically be issued for gifts of $20 or more, or upon request. For monthly donations: I would like to give monthly to Casey House and I understand that my donation will be deducted from my bank account or charged to my credit card on the 15th of each month. A charitable tax receipt for the full year of donations will be issued at the end of the year. I understand that I may change, pause or cancel my monthly contributions at any time by notifying Casey House Foundation in writing. I may revoke my authorization at any time, subject to providing notice of 15 days. To obtain a sample cancellation form, or for more information on my right to cancel a Pre-Authorized Debit (PAD) Agreement, I may contact my financial institution or visit www.cdnpay.ca. I have certain recourse rights if any debit does not comply with this agreement. For example, I have the right to receive reimbursement for any debit that is not authorized or is not consistent with this PAD Agreement. To obtain more information on my recourse rights, I may contact my financial institution or visit www.cdnpay.ca.

You can also make a donation online at www.caseyhouse.com

“I felt this incredible relief,” recalls Richard. “But it didn’t seem real at first. I kept thinking she was just telling me this to make me feel better.” After some time, with the new treatment successfully underway and the fluid draining

from his belly, Richard was able to try walking again. “The first time I went for a walk down the block using my walker, one of the nurses came with me. She was so nice, she didn’t rush me. We walked all the way to McDonald’s so I could get my own french fries. People had always gone to get them for me before. It was good to be able to do something for myself again.”

I want to support ongoing programs and services at Casey House.


YOU CAN OPEN DOORS

I want to support the $10 million Capital Campaign to build a new home for Casey House. n One-time donation

n Monthly donation

n $500 n $250 n $100 n $50 n $25 n $15 n Other $_________

In October 2010, Casey House embarked on its first ever capital campaign to raise $10 million in private funding as part of a $35.5 million redevelopment project to build a state-ofthe-art facility that will feature our long-awaited Day Health Program. The Campaign Cabinet volunteer fundraising team is led by Jaime Watt and is comprised of members of the business and philanthropic communities along with current and past Casey House Board members. With his seven years of experience on the Casey House Board and as Board Chair, Jaime brings invaluable leadership to achieve success in the Campaign. Everyone at Casey House was delighted with Jaime’s decision to chair the Campaign.

This donation is being made on behalf of: n A business n An individual First Name

CAMPAIGN UPDATE

Last Name

Address

Donor Support

City

Prov

Telephone (Residence)

Thanks to our tremendously generous donors, over $4 million has been raised towards our $10 million goal. Early commitments to the Capital Campaign have come from long-time supporters including Mark S. Bonham, who gave a $1 million gift, and Andrew Faas, who has pledged $500,000.

Postal Code Telephone (Business)

Email

Board and Alumni Support

n I do not wish to receive correspondence from Casey House.

We are pleased to report that present and past board members —several of whom were members of the 1988 founding group of volunteers—have collectively pledged more than $847,000 to date towards a $1 million group goal. Additionally, we proudly recognize that 100 per cent of our Board of Directors made personal commitments to the Campaign—a great motivator for others who are considering their support.

Does your employer match your contributions? n Yes n No n I would like my gift to remain anonymous. n I have remembered Casey House in my will. n Please send me information about legacy gifts.

Credit Card Information

Planning Update

n Visa n MasterCard n Amex

In our Fall 2011 newsletter, we reported that the Ontario Minister of Health and Long-Term Care had recently visited Casey House to announce that the government has committed to fund the majority of the construction costs. We are planning to go to tender for the project in 2013 - 2014.

Card No.

Exp

Cardholder Name Signature (My signature indicates that I have read and understand the disclaimer below) For one-time donations: A charitable tax receipt will automatically be issued for gifts of $20 or more, or upon request. For monthly donations: I would like to give monthly to Casey House and I understand that my donation will be deducted from my bank account or charged to my credit card on the 15th of each month. A charitable tax receipt for the full year of donations will be issued at the end of the year. I understand that I may change, pause or cancel my monthly contributions at any time by notifying Casey House Foundation in writing. I may revoke my authorization at any time, subject to providing notice of 15 days. To obtain a sample cancellation form, or for more information on my right to cancel a Pre-Authorized Debit (PAD) Agreement, I may contact my financial institution or visit www.cdnpay.ca. I have certain recourse rights if any debit does not comply with this agreement. For example, I have the right to receive reimbursement for any debit that is not authorized or is not consistent with this PAD Agreement. To obtain more information on my recourse rights, I may contact my financial institution or visit www.cdnpay.ca.

You can also make a donation online at www.caseyhouse.com

Casey House senior leadership has been working with regulatory bodies and our architect to develop the plans for the new building fronting on Jarvis Street. We will be moving to the detailed design stage in the near future.

LGBT community to make a statement A mini-campaign is now underway, with a goal to raise 100 gifts of $10,000 each (for a total of $1 million) from leaders in the LGBT community. These leaders will send the message that the LGBT community is still proud to support Casey House and people who are living with HIV/AIDS today. In recognition of this generosity, these individuals will each be recognized and named within the community dining room in our new home.

If you are interested in adding your name as a leader, please contact Pat Hetherington: 416-962-4040 ext. 235 phetherington@caseyhouse.on.ca


CONGRATULATIONS TO THE RECIPIENTS

THE CASEY AWARDS Created in tribute to June Callwood, The Casey Awards annually celebrate individuals and organizations across Canada that demonstrate leadership in the fields of HIV/AIDS & social justice.

Dr. Mark Halman The founding director of the HIV Psychiatry program at St. Michael’s, Dr. Halman has for 20 years been training and inspiring educators, physicians and health care and AIDS service workers in the fields of HIV/AIDS and mental health. His innovative approach to education provides excellent training experiences for students while ensuring that patients are cared for with dignity and in an environment that affirms diversity. This award recognizes Dr. Halman’s passion, innovation. dedication and collaborative leadership—locally, nationally and internationally—in advancing the field of HIV/AIDS and mental health.

Committee for Accessible AIDS Treatment Co-Chairs:

TOMMY SMYTHE, SUZANNE DIMMA & MARK CHALLEN

Formed in 1999, CAAT responded to the deep need experienced by vulnerable newcomers living with HIV/ AIDS who face significant barriers in accessing treatment and services. Since that time CAAT has played a pivotal as a connector and educator with other service organizations on the needs of people living with HIV/AIDS. CAAT is being recognized for its leadership and capacity-building in promoting the health, well-being and meaningful empowerment of newcomer people living with HIV/AIDS.

The Wartman Family When Moncton, New Brunswick native Michael Wartman made the brave decision to publicly declare his HIV status in order to lessen stigma and discrimination in his home community, his family rallied in support of his efforts. Michael passed away in 2000, and his family continues their activism in his memory. This award recognizes their pioneering leadership in proudly advocating for the rights and dignity of people living with HIV/AIDS, and the family’s ongoing compassionate service in supporting the needs of people living with HIV/AIDS and their loved ones.


UPCOMING EVENTS All-Day Symposium on HIV & Mental Health - March 28, 2012 Nursing Week May 7 - 13, 2012 Annual General Meeting June 12, 2012 Pride Week June 22 - July 1, 2012 Art with Heart at the Carlu October 17, 2012 Monogram Dinner by Design hosted by UMBRA - April 5, 2012

For more about these and other events, visit

www.caseyhouse.com

Same sex couples, death and legal implications Guest Editorial by Robert Coates, BSc, LLB, TEP When Casey House was founded in 1988 as the first HIV/ AIDS hospice in Canada, life was different. Samesex couples were not recognized in any legal sense. Couples who had been together for many years could not marry and had no rights to property, support, or rights to inherit if their partners died without making a will (intestate). Wills made leaving property to surviving same-sex spouses were often challenged by other family members. So how does death affect gay relationships now? Well, it still depends on whether or not you are married to each other. It is only married spouses who have some rights to inheritance in the event that a deceased spouse dies intestate. Unmarried spouses still have no rights of inheritance on intestacy. Of course, properly drafted wills can be very effective to ensure that the deceased’s assets are passed on to a surviving common–law or married spouse. I remember the first time that a client came to see me in the 1980’s, distraught, to advise me that his partner of many years was very ill, dying at a local hospital. The “blood relations” of the partner refused him entry to the hospital room to see his partner. This was a traumatic

experience which needed to be addressed. At the time it was not possible to draft what is now known as a Power of Attorney for Personal Care. We drafted “Living Wills” which were expressions of intention and which had no legal force or effect with respect to our medical care. We hoped that hospital staff and family members would respect these wishes. It did not always happen. Today, with a change in the law, an unmarried same-sex partner is recognized before “blood relatives” as a designated decision maker. To be certain however, we still need to execute appropriate documentation. We need to execute Powers of Attorney for Personal Care. In such a document, which is legally enforceable, you may appoint another person or persons to make decisions regarding your medical care, health care or long term care. If you have wishes regarding your care, then you may express those wishes to the appointed decision maker who is required by law to make a decision based on the wish, even if he or she disagrees with the wish. It is only if you have expressed no wish applicable to the circumstances that the decision maker is required to make a decision based on what he or she considers to be your best interests. Making a will and executing powers of attorney for both property and personal care should all be integral parts of your estate plan.

9 Huntley St. Toronto, Ontario M4Y 2K8

Tel: 416.962.7600 Fax: 416.962.5595

www.caseyhouse.com To make a donation, volunteer, or for more information, please contact us at heart@caseyhouse.on.ca Charitable Registration #10687 8374 RR0001


Casey House Newsletter Spring 2012: You Open Hearts, Minds and Doors  

Published each spring and fall, Casey House's newsletter provides information about how Casey House is working to advance the health and wel...

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