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Season’s Greetings,


Transition is published six times a year by the BC Coalition of People with Disabilities. Subscriptions are $20/year. Founding Editor Richard A. Watson

Admin Assistant Elena Berry

Editor/Layout Ann Vrlak

Alternate Formats Val Stapleton Eleanor Pasholko

Cover Design Fiona Gamiet Researcher/ Proofreader Eleanor Pasholko Jane Dyson

Volunteer Coordination Janis Walsh Mailout Coordination Florence Corbett

We welcome articles, graphics, creative writing, et al. The editors reserve the right to edit and/or withhold material from publication. BC Coalition of People with Disabilities 204-456 W. Broadway, Vancouver, BC V5Y 1R3 (604) 875-0188 • TTY (604) 875-8835 Fax (604) 875-9227 Transition only: trans@bccpd.bc.ca BCCPD: feedback@bccpd.bc.ca We’re glad to see Transition material republished, with credit to “Transition, BC Coalition of People with Disabilities” and the edition date. Editorial Statement: The views and opinions expressed within the pages of Transition are not necessarily those held by the total membership or Board of Directors. The material presented herein is meant to be thought-provoking and to promote dialogue. Transition is a forum to share information within the disability community, and with government and the general public. It is also an opportunity for people with disabilities to display creative talent.

features Editorial by Laurie Beachell ........................................ 2 The future of disability supports in Canada ............. 4 Opening up the world through supports by Jo Dunaway .............................................................. 6 Support flexibility allows freedom by Jo Dunaway ............................................................ 12 Victory for family caregivers .................................... 16 PEADC Progress .......................................................... 18 Circles of support by Jo Dunaway ........................... 22 Good news on user fees by Christine Gordon ..................................................... 26 The support of a job coach by Linda Delparte ......................................................... 30

news World AIDS Day 2005 .................................................... 9 Access to Health Award winners ............................ 19 Court makes landmark ruling on disability and immigration .......................................................... 20 Hepatitis C Update by Jane Dyson........................... 28 The Kids are a hit at the Fringe! ............................... 29

special In Memoriam: Barbara Parson ................................. 21 Cover photos by Looking Good Photographic

Disclaimer: Any firm or company advertising in Transition is for our readers’ benefit and does not constitute an endorsement by the BCCPD. Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right to privacy and the protection of their personal information. The BCCPD is committed to ensuring compliance with British Columbia’s Personal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personal information it collects about people and why. It will store information securely and identify who has access to the information it collects. It will inform people what information will be shared, with whom, and why. BCCPD Privacy Officer: Mei Ng (604) 875-0188; Alternate: Jane Dyson (604) 872-1278; privacyofficer@bccpd.bc.ca. Canadian Publications Mail Product Sales Agreement No.40051676

November/December 2005 Transition

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by Laurie Beachell

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he Council of Canadians with Disabilities’ (CCD) applauds Transition’s two-edition look at disability supports. In fact, a new investment in disability-related supports is CCD’s priority issue. CCD and the Canadian Association for Community Living (CACL) are working together on the best ways to advance this agenda for people with disabilities across Canada. The BCCPD has played an important role on the provincial level through its work in identifying gaps in service, as well as presenting options for reform. Disability-related supports are critically important to all people with disabilities. Yet, too often we think of these supports only as technical aids or mobility devices. As this Transition illustrates, supports also include personal supports or “partnerships” with interpreters, home support workers, specialized skill trainers, etc. Without these kinds of supports, Canadians with disabilities cannot pursue an education, employment or participate meaningfully in community life.

• Limitations in disability supports and services are usually defined as service issues: that there is simply a lack of supports and services. Framing the issue this way assumes the service system is in place and all that is needed is more funding. In fact, what is needed is an investment strategy by all levels of government to deliver on the human rights and citizenship vision of In Unison (see sidebar page 3). • The challenge is to create a comprehensive system that gives people with disabilities, families and communities the resources they need to create, arrange, and mobilize needed services and supports. • For federal and provincial/territorial governments, the challenge is to design a system of transfers to individuals, families and communities that will deliver the disability supports needed to build an inclusive and accessible Canada.

Our Vision to Guide a Decade of Change

Specifically, here are some ways all levels of government can work to create this comprehensive system of resources for disability supports: • Transfers to individuals to ensure they have: - Needed basic income - Income to purchase supports (both tax deductions and direct funding for disability supports) • Transfers to family caregivers to ensure they can access needed home accommodations and disability supports, build bridges to communities for family members with disabilities, arrange paid leave from employment to provide care, and have respite to safeguard their own health. • Transfers to communities to transform outmoded service systems,

Over 10 years, CCD’s goal is to establish a comprehensive system that provides three tiers of resources and supports for the disability community: people with disabilities, their families and communities. We believe that the investment of resources for disability supports at all these levels will have the greatest impact on people with disabilities’ independence and participation in our communities.

The Challenge

There are many challenges in bringing this vision to reality. Here is the key challenge we see and how we can address it.

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Elements of a Comprehensive System

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create needed supports, provide people with disabilities and families information and coordination supports, better link formal and informal services, and establish accessible physical infrastructure and transportation systems. • Transfers to the disability community to engage in a process of transforming communities, policies and practices to further expand the system of quality supports. These transfers and the accompanying program commitments are not the responsibility of one level of government on its own. Federal and provincial/territorial governments need to develop a joint, long-term investment strategy. Here are the first steps CCD has identified for adapting various agreements and relationships between levels of government.

financial arrangements under Canada’s Social Transfer to Provinces and Territories. 5. Ensure the emerging National Caregiver Agenda, which hopes to address respite care, tax benefits and employment insurance for caregivers, complements rather than replaces a disability agenda. Our vision is that people with disabilities will then benefit from Canadian society in ways that are equal to other Canadians. The huge gap in education, literacy, income, employment, safety and social and economic well-being will close.

1. Redesign Canada’s Multi-lateral Framework Agreement as a funding mechanism by which the federal government can transfer funding to provinces and territories for increasing disability supports to individuals, families and communities. 2. Make the Labour Market Development Agreements (LMDAs) the main vehicle for investing in employment for people with disabilities. This will require provinces to negotiate explicit provisions in the LMDAs for investing in employment for people with disabilities. 3. Build a disability component into other multi-lateral initiatives, for example, cities and communities, post-secondary, early learning and childcare, Aboriginal strategy and seniors. 4. Commit to a long-term agenda to address the exclusion and poverty of people with disabilities through

In this edition, a few writers refer to a report, In Unison: A Canadian Approach to Disability Issues–a joint federal, provincial and territorial vision for full participation prepared in 2000.

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Laurie Beachell is Executive Director of the Council of Canadians with Disabilities

in unison

The report’s Preamble says it is intended to promote the full integration of people with disabilities in Canada and that “there is much scope to improve the current patchwork of federal, provincial and territorial benefits and services. Work needs to be done at both levels of government to reduce the fragmentation of our supports and services. More effective and coordinated programs would better serve Canadians with disabilities and the country as a whole.” The full In Unison document is available at: http://socialunion.gc.ca/pwd/unison/ unison_e.html.

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How can we

The future of disability supports in Canada BCCPD and BCACL co-host a meeting on creative options. Dr. Prince has been working on disability issues for the past 15 years with a focus in recent years on availability and affordability of disability services and supports.

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The theme of this Transition, and our last edition on disability supports, is that these supports are a prerequisite to full participation in all aspects of Canadian society. This participation was clearly envisioned in the In Unison framework adopted in 2000 by federal, provincial and territorial ministers. National organizations such as the Council of Canadians with Disabilities (CCD) and the Canadian Association for Community Living (CACL), and provincial organizations such as the BCCPD are working to raise public and political awareness about the pressing need for disability supports. We are lobbying the federal government to adopt an action plan to address this need. On October 19, 2005, BCCPD and BCACL (BC Association for Community Living) co-hosted a meeting for community groups where Dr. Michael Prince from the University of Victoria made a presentation on disability supports options. Dr. Prince has been working on disability issues for the past 15 years with a focus in recent years on the availability and affordability of disability services and supports. The meeting was an opportunity to hear about the ongoing discussions around a disability strategy. Dr. Prince had this to say about four possible options for the future of disability supports in Canada.

Option 1

New federal transfers to provinces and territories for supports Under this option, the federal government could use the existing program of transfers to the provinces and ramp up the amount over the years. According to Dr. Prince, the provinces, who would decide how to use the funds, are more enthusiastic about this option than the federal government which has concerns about accountability. However, he said, this factor could be addressed by providing federal funds directly to disability groups within the community to work with the provincial government.

Option 2

New federal refundable tax credit for people with severe disabilities This option involves a tax credit that would go directly to people with severe disabilities to help defray the costs of supports. However, Dr. Prince pointed out, tax benefits are of little use to most people with disabilities who don’t have taxable income.

Option 3

Earned income supplement for low income workers with disabilities This option is a refundable tax credit for people with disabilities who are earning a low income. Dr. Prince has not seen much interest in this option and, he said, some of the other options would have to be in place as well for it to work.

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Option 4

A new Canadian disability income program with reinvestment by provinces and territories into supports Dr. Prince described this option as a system whereby an eligible person with a disability would receive a monthly cheque for $1000 from the federal government. The program would cost $4 billion a year, he said, but at the same time it would remove a large number of people from other disability programs. Dr. Prince said that it is possible that as many as 500,000 people across Canada would qualify for the program and be lifted off income assistance, freeing up money for provinces to reinvest in more supports and services. Since this program would be Canadawide, a participant would not be cut off by moving to another area of the country. According to Dr. Prince, Options 1 and 4 hold the most promise for a workable strategy for the disability community. But, he said, governments and politicians must be educated to let go of their fascination with the tax system and recognize expenditure programs as the most effective component of a disability supports strategy. While, in his opinion, the Canadian disability income program envisioned in Option 4 is the most challenging of the options, he also thinks that it is the most exciting and promising. It is possible, said Dr. Prince, to work to-

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ward this long term goal while putting Option 1 into action right away. The federal transfer system is already in place and all that is required is for the federal government to increase the amount of transferred funds in order to improve existing disability supports and add new ones. According to Dr. Prince, this could be done immediately at the instigation of the federal or provincial government. The BC government’s expression of a Golden Decade that, among other things, would see this province with the best supports in the country, is an opportunity for the disability community to encourage the government to move on this issue.

BCCPD Resources

BCCPD has been working for some time around the issue of disability supports, concentrating on two areas: equipment and personal supports. This focus is reflected in a two-part Transition series. Our last edition, September/October 2005, was dedicated to Disability Supports: Equipment & Assistive Devices while this issue looks at personal supports and partnerships. A video of the presentation by Dr. Prince and the discussion that followed is available in VHS or DVD format from BCCPD for the cost of the postage. Contact Val Stapleton at BCCPD at 604-875-0188 or by email at feedback@bccpd.bc.ca.

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Opening up the world by Jo Dunaway

Eddy Morten and interpreter Brenda Erlandson sit facing one another and, as their hands move in an intricate dance, the words pour out. For my benefit, Brenda speaks them aloud. She is interpreting through tactile signing for Eddy who is deaf-blind. Eddy was familiar with this way of speaking before he needed it himself– his older brother was deaf-blind from birth and this was how they communicated. Eddy, who has Usher syndrome

type 1, was born deaf, but did not begin to lose his vision until the age of eight. The retina of his left eye detached, leaving him with sight only in his right eye. His vision slowly deteriorated and almost disappeared by the time he was 10 or 11. Many years ago, surgery to repair his left eye was unsuccessful. At about age 20, he began to develop cataracts which he had removed two years ago. “It’s better now,” says Eddy. “Before the cataracts were removed, it was like looking through the windshield of a car that has been outside all night – all foggy and fuzzy. But the cataract surgery cleared away a lot of the fog. Now it’s like looking through a tunnel–a very narrow tunnel, but clearer.” He can see best in the evening light and wears dark glasses to ward off glare in bright sunshine. Eddy is an athletic, confident and independent person who likes to be out doing things. Whether it’s a long walk or a trip to the grocery store or

Brenda, and the other interpreters Eddy calls on, are his personal supports–supports who think and breathe, rather than other disability supports like computers or hearing aids. 6

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attending a meeting or workshop, his constant companion for the last seven years has been Harmony, a friendly black Labrador. “We’re always together,” says Eddy. “She’s a trained guide dog and she’s very hardworking. It’s her job to keep me safe.” But when they are at home, Harmony is off duty–a big loveable pet who greets guests and plays with Eddy’s two young sons when they visit. Until about 15 years ago, Eddy communicated primarily through visual use of American Sign Language. “I needed to be quite a distance from the other person to be able to see their hand movements. With tactile signing, it’s the opposite–I have to be very close to the person. It’s an intimate way of talking.” Although tactile signing makes use of American Sign Language, the speakers are actually feeling the shape of the signs in the movement of each others’ fingers. It’s a technique that takes getting used to. “Some people aren’t comfortable with such close contact,” says Eddy. “But, once they get comfortable, it’s fine.” Eddy says there is also no denying that some people are just a better fit together. He and Brenda have worked together and been friends for more than nine years and their conversation is rapid and fluid. “Very rapid!” laughs Brenda. “Eddy is a fast talker.” He is also a humorous, animated speaker, enhancing his signing with

November/December 2005 Transition

Tactile signing In tactile or hands-on signing, the receiver’s hands are placed lightly on the backs of the hands of the signer to read the signs through touch and movement. The sign language used is often a slightly modified version of the local Deaf Sign language. This is especially the case when used by people with Usher syndrome who may have first lost their hearing and later their sight. Non-manual elements of the deaf sign language, such as facial expressions, have to be substituted with information produced manually. body language and gestures, as well as smiles and other facial expressions. Brenda, and the other interpreters Eddy calls on, are his personal supports–supports who think and breathe, rather than other disability supports like computers or hearing aids. Eddy will book an interpreter when he attends a workshop or a meeting of the BC Association of the Deaf-Blind. Interpreting in such a setting is intense–physical, visual and auditory information need to be interpreted. So two or more interpreters will usually spell each other off. An intervenor may also be there to guide Eddy to his destination, describe his surroundings for him, and help him do things like locate refreshments and washrooms. Intervenors do interpret, but they don’t do the intensive interpreting needed for something like this interview. In addition to his personal supports, Eddy also has the help of some technology. Many bank machines, for example, now have Braille on the keypads, so he can perform his own transactions. He frequently carries his continued on next page

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Opening up, continued from previous page

Eddy works with a program to help members of the small deaf-blind community get into the broader community and become more independent. Photos by Looking Good Photographic

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own device about half the size of a laptop with both a regular and a Braille keyboard. In addition to holding downloaded information from his computer when he is at meetings or travelling, it can be used to communicate with a sighted person through written messages. He also communicates via email by using a program that greatly increases the size of the lettering or another program that converts it to Braille. All of these disability supports enable Eddy to live as independently as possible–which he has always tried to do. He has always been involved in athletics and by high school had decided that he was going to be an Olympic wrestler. He participated in the Paralympic Games in 1980 and 1984. Then wrestling was dropped as a Paralympic event but, undeterred, Eddy switched to judo. His thrice-weekly training sessions were with sighted and hearing athletes, so Brenda accompanied him to relay visual signs and instructions given by the coach.

Eddy won a Bronze Medal in judo at the 1988 Paralympic Games in Seoul. A rotator cuff injury put an end to judo, but Eddy continues to run, lift weights, work on a stationary bike, and walk with friends or with Harmony. “I can see a little bit, so I’m confident on my own,” he says. However, not everyone is so Eddy helps out. He works with a program to help members of the small deaf-blind community get into the broader community and become more independent. He helps train intervenors and guides, and coordinates meetings between individuals and intervenors. “It’s a very personal interaction, so it doesn’t always work between two people. That’s OK–if it’s not a good match we just try a different one.” Eddy says that something as simple as a walk with a friend or intervenor can open up the world around a deaf-blind person. “They can tell you how the mountains look that day, describe your surroundings, tell you what the other people are doing– so you are part of it.”

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BCCPD UPDATE

World AIDS Day 2005 World AIDS Day (WAD) is marked around the world on December 1st. The BCCPD’s AIDS & Disability Action Program once again partnered with BC seniors groups and disability centres at colleges and universities. Each year, we distribute World AIDS Day pins, postcards and our reader-friendly HIV prevention booklets for information displays. This year we were pleased to promote two new posters designed by artist carol weaver–a BCCPD poster and a beautiful new poster celebrating seniors and elders–along with our annual World AIDS Day poster. Some examples of other World AIDS Day activities around the globe include: • Shopping centre displays and distribution of condoms in pubs in Australia • “Wear a Red Shirt” campaign to show support for WAD in Barbados • Solidarity march, slide show and quilt ceremony in Belgium • Six thousand letters mailed to city halls in Brazil to encourage WAD activities • Candlelight procession through refugee camps in Ethiopia • First Red Ribbon Film Festival in Korea • Conference on HIV prevention among young people living “outside the home” in Latvia • Parade, HIV game show and poem-writing event in the Solomon Islands • Mural by children illustrating their experience of HIV and AIDS in Switzerland

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While World AIDS Day is an annual event, it is our hope that the awareness and understanding created by WAD activities has a lasting impact. HIV/AIDS continues to devastate families around the world. Prevention of HIV is the solution to the AIDS crisis and you can play a part. Contact us for free copies of our HIV prevention booklets to share with others who may feel uncomfortable asking for information about HIV and sexual health. HIV affects everyone, including people with disabilities.

aidsfacts every minute–five people die of AIDS every day– 8,000 people die of AIDS in 2004–five million people were newly infected with HIV, the virus that causes AIDS right now–40 million people are living with HIV Statistics from www.worldaidsday.org

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A D V E R T I S E R F E AT U R E

Shelter Aid for Elderly Renters Funding Increases

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oday’s seniors are living longer, healthier and more independently. They make up 14 per cent of BC’s population and that number is expected to increase to 23 per cent by 2013. In response to this ongoing growth, the provincial government has doubled its Shelter Aid for Elderly Renters (SAFER) funding to help more BC seniors meet the cost of market rents. SAFER provides direct cash assistance to BC residents aged 60 and over with low to moderate incomes who pay more than 30 per cent of their gross income on rent. This is the first funding increase to the SAFER budget since 1990, with $16.6 million in total funding this year and $34.1 million in 2006/07. Approximately 12,000 seniors currently receive monthly subsidies under SAFER, administered by the provincial Crown agency BC Housing. That number is expected to grow to more than 19,000 with the expanded benefits. BC Housing pays a portion of the difference between 30 per cent of income and the lesser of the actual rent paid or the rent ceiling. Provincewide rent ceilings were increased on October 1, 2005, to $610 for singles and $665 for couples, up from $520 and $575 respectively. A senior with $12,500 in annual income who pays $500 rent a month will now receive approximately $169 a month on SAFER, instead of $105 a month under the previous criteria.

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There are now separate, higher rent ceilings for residents in the Greater Vancouver Regional District (GVRD): $700 for singles and $755 for couples. Also, seniors who pay substantive “pad rental fees” in owneroccupied manufactured homes are now eligible for SAFER benefits. Val MacDonald, Executive Director of the Seniors Housing Information Program, a non-profit organization for seniors who live or wish to live in the Lower Mainland, applauded the funding increase. “We’re very pleased with the government’s decision to increase the rent ceilings, and for recognizing that rents in the GVRD are higher than averages elsewhere in the province,” said MacDonald. “This will help improve the financial situation for thousands of lower income seniors.” SAFER applicants must have resided in BC for a full 12 months prior to their application, and lived in Canada for at least 10 continuous years as an adult. Anyone who receives provincial income assistance, excluding the Medical Services Plan, is ineligible for SAFER benefits, as are individuals who live in subsidized housing, co-operative housing or residential care facilities funded by the Ministry of Health. BC Housing has sent information about the increased SAFER benefits to all current recipients, making reapplication unnecessary. For new applicants, information and application forms are available from BC Housing at 604-4332218 in the Lower Mainland, 1-800257-7756 province-wide or online at www.bchousing.org

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Support flexibility allows freedom John Neumann, Executive Director of the North Shore Disability Resource Centre, spoke with Transition about how his personal supports allow him to have a full life of work and play ~ by Jo Dunaway

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Like all busy executives, John Neumann has a full day that often extends into an evening meeting or event. And, like all busy executives, he relies on organization and planning to get it done. But for John, Executive Director of the North Shore Disability Resource Centre (NSDRC), the planning and organization have an added dimension–managing his personal supports. In 1973, when he was 21 years old, a motor vehicle accident left John with C5-6 quadriplegia. He spent the next six months in Vancouver General Hospital and the following 18 months in GF Strong Rehab Centre. “They kept you in for a long time in those days,” says John. “The entire second and third floors at GF Strong were for quads.” After being discharged from GF Strong, John moved into a renovated basement in his parents’ home and resumed his studies at Simon Fraser University. In 1981, John decided to volunteer some time with what was then called the North Shore Association for the Physically Handicapped. What began as “just answering the phones” grew into a job when Executive Director Gloria Brando initiated a project to provide affordable housing for people with disabilities on the North Shore. John moved into the second group home that was eventually built and administered by the association which had become the North Shore Disability Resource Centre. Soon after, John met Fiona Lewis and the couple moved into an apartment near Capilano College. In 1995, they moved to their present home in Lynn Valley, just “a four-minute wheel from work” for John. The NSDRC split into two programs and in 2001 John became the Executive Director of one program:

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non-contracted services such as advocacy, outreach and information. Throughout these years, John needed some disability supports to enable him to meet his growing responsibilities. When John lived in his parents’ basement, he received help from home care nurses and relied on his parents to get him up in the morning and put him to bed at night. “It puts a lot of restrictions on your life,” John remembers. “You have to go through an agency to make any changes in times or personnel. It all depends on the agency’s schedule. It’s pretty certain that you’re not going to be going to bed at the time that you choose.” John says that, “In the first few years we were together, Fiona helped me get to bed because there was no way we could get a worker to come in when I wanted them. But that’s not healthy for an adult relationship,” John says. “And she has her own full-time job and responsibilities.” A turning point for John came in 1994 with the development of Choice in Supports for Independent Living (CSIL). “CSIL started as a pilot project of the Ministry of Health in 1993 and has been going ever since. It gives you control over how you use the home support hours and services you get.” With CSIL, John signed a contract with Vancouver Coastal Health (VCH). An assessment determined that he was entitled to 120 hours of personal support a month, funds were deposited directly into his bank account and the ball was in his court. “So, I’m now an employer with a contract with VCH. I interviewed and chose my workers. They are my employees and I do the hiring, firing, scheduling and paying. It’s up to me to arrange my personal supports to suit my own circumstances and schedule.”

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He has three workers–two regular workers and a relief backup. Two of the workers have been with him more than two and a half years and he is glad for it. “Stability is so important. I don’t want to have to constantly find and train new people and establish new relationships. It’s not just my home that they’re in, it’s Fiona’s home too, so it’s important that we all work well together.” John manages his support creatively and carefully. His 120 hours a month equal about four hours a day, split between morning and evening. Most days begin at 7:30 a.m. when one of his workers arrives to help him get up, shower and dress, and makes him coffee and breakfast. By 9 a.m., continued on next page

Meet CSIL Choice in Supports for Independent Living (CSIL) allows individuals direct funding to buy the personal support services they need, instead of the money going to agencies. The person then hires their own attendants, and manages and tailors the services to meet their own needs. CSIL has two decision-making frameworks or phases: in Independent Management (Phase 1), the person has responsibility for managing their own funding and supports. With the Client Support Group (Phase 2), the person is not able to direct their own care. Instead, a small group of family and friends form a client support group. The group manages the funding and supports in collaboration with the person. CSIL has been hugely successful with the people who have been able to access it. The availability of the program province-wide is an ongoing campaign for BCCPD and others. For more information on CSIL, visit BCCPD’s Individualized Funding Web-Based Resource Centre at www.bccpd.bc.ca, Ongoing Programs to see these downloadable PDF resources: Getting Started on CSIL - 17 pages Guide to Individualized Funding - 95 pages Hiring Personal Attendants - 37 pages The Voice of the Cerebral Palsied of Greater Vancouver has also prepared a CSIL Handbook. Contact VCP at phone 604-874-1741, between 12 and 4 pm, fax 604-874-1746, or email vcpgv@vcn.bc.ca.

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Creative use, continued from previous page

“I couldn’t do the job I have or lead the life I do if it weren’t for the CSIL program.”

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he has wheeled to work where his office is set up to make the best use of support equipment and devices. “I’ve been using voice recognition computer software for a long time.” John’s needs in the evenings are more varied than in the mornings. “Every evening in the week can be different depending on what I have on–a meeting or a social function or maybe a football game. And I don’t always know in advance exactly when I will be finished. So flexibility in my workers is a big issue. I call when I’m on my way home and my worker meets me there and helps me get ready for bed.” The end result of having this kind of support is life-changing. John is certain that, “I couldn’t do the job I have or lead the life I do if it weren’t for the CSIL program. I just wouldn’t have the time or the energy or the flexibility in how I use my personal supports. This levels the playing field for me,” he says. “I know some other quads who are also with CSIL and who work full time and do a lot of things. Some of

them are a lot more adventurous than me and are out and about 18 hours a day. There is a range of difference in functionality among quads and this kind of disability supports program allows for that difference. It’s what we need.” John knows he is fortunate to have the level of technical and personal support he does. “I work in the field so I know how to go about finding what I need to make my life work for me. I know how difficult it is otherwise,” he says. “I remember what it was like when I was having to deal with the bureaucratic process to try to get a piece of equipment that I needed. It’s long and involved and it can make you lead a very restricted life–and that’s not healthy.” “It’s very difficult if you don’t know what’s available out there and how to find it,” John says. “CSIL is province-wide and there is also a Phase 2 for people who need more help in managing their affairs. However, some case workers haven’t even heard of CSIL and John wants to see that change. “Part of my job is advocating for people who are stuck in the system, to try to expedite the services and supports they need. I know something for sure–once a person with a disability has an advocate the bureaucracies treat them differently. They have someone who knows the system and what they should be able to access and they have someone watching the process.” And he is intent on improving services and disability supports so the “playing field” can be levelled for everyone. “CSIL is a great program. It changed my life. But the level of funding from the Ministry of Health to the Health Region to CSIL hasn’t changed since 1994. It’s not keeping pace. That’s something we are working on.”

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Your Membership is Valuable The BC Coalition of People with Disabilities is a province-wide, non-profit organization run by and for people with disabilities. We are an umbrella group representing people with all disabilities and our strength comes from membership support. On behalf of people with disabilities in BC, we will continue striving to fulfill our Mission Statement.

Mission Statement The BC Coalition of People with Disabilities was founded upon the belief that: • people with disabilities want and are entitled to equal opportunities in all the activities and privileges that other Canadians take for granted, • full inclusion of people with disabilities within our communities is a fundamental necessity for a diverse, productive and economically vibrant social environment, and • people with disabilities have the right to expect equality, fair treatment and respect. Because of these beliefs, the purposes of the BC Coalition of People with Disabilities are: • to use education, advocacy and special projects to work toward the dissolution of the physical, attitudinal and systemic barriers in our society that deny us equal opportunities, • to provide a coherent voice for the cross-disability communities in BC, • to share information with and support other self-help disability organizations with common goals, and • to carry out our mission and projects within a self-help model.

Membership Form

I accept your invitation to join the BC Coalition of People with Disabilities and enclose my Membership Fee of $12 (groups and individuals). I am also sending along a tax-deductible donation of $ _____________. BCCPD has a charitable tax number; donations over $10 are tax deductible. New membership or

Renewal

Voting Member or

Non-voting Member

Voting members are people with disabilities and self-help groups where at least 50% of members have a disability. Other individuals and groups are non-voting members.

Name ________________________________________

City ____________________ P. Code____________

Organization __________________________________

Phone _____________ Email __________________

Address ______________________________________

Please return your payment with this form, to: BCCPD, 204-456 W. Broadway, Vancouver, BC V5Y 1R3. We thank you for your support.

______________________________________________

Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right to privacy and the protection of their personal information. The BCCPD is committed to ensuring compliance with British Columbia’s Personal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personal information it collects about people and why. It will store information securely and identify who has access to the information it collects. It will inform people what information will be shared, with whom, and why. BCCPD Privacy Officer: Mei Ng (604) 875-0188; Alternate: Jane Dyson (604) 872-1278; privacyofficer@bccpd.bc.ca

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A D V E R T I S E R F E AT U R E

Victory for family caregivers This month, a sevenyear legal battle concerning people with disabilities and their ability to pay family caregivers ended in favour of families. Earlier this year, Transition carried a story on Cheryl Hutchinson and her father who brought a Human Rights case against the Ministry of Health in 2001. They alleged discrimination by the Ministry because it refused to allow family members to be paid as caregivers under the Choice in Supports for Independent Living (CSIL) program. The Human Rights tribunal ruled in Cheryl’s favour in 2004 and awarded her father, Philip, damages and ordered the provincial government to change its policy to allow family members to be paid when they are the most appropriate caregivers. Though the government appealed the decision, the BC Supreme Court upheld the Human Rights Tribunal ruling. Surprisingly, the province did not appeal the second ruling. This means that the government will now have to change its policy to allow “exceptions” so family caregivers may in some cases be paid to care for their loved ones in their own home. It has been a long, tiring fight for Cheryl and her father Philip. Their victory will allow other families access to financial support to care for their loved ones. Our thanks to them both and we wish them well.!

This means that the government will have to change its policy to allow “exceptions” so family caregivers may in some cases be paid to care for their loved ones in their own home.

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Ken Lagasse Chartered Accountant The Regional Accounting Firm of Ken Lagasse Chartered Accountant (KLCA) has for over 30 years focused on helping small and medium sized businesses and business professionals reduce their tax burden. It takes genuine concern and effort to monitor a client’s business activities and to continually define and achieve the best tax position for them. This attitude has not only prevailed, but has been enhanced by the firm’s recent creation of the Medical/ Disability Tax Solutions Division. After helping hundreds of clients qualify for disability tax credits and refunds, it is clear that the combined medical and tax experience of the firm is unique and effective. The firm has learned that awareness is just a small part of the process of ensuring that all people with disabilities receive all the disability tax credits they are entitled to. Surprising factors come into play. The lives of people with disabilities are full of challenges, but taxes are often one challenge too many. The firm of KLCA will answer that challenge for you. Ken Lagasse Chartered Accountant, Regional Accounting Firm (Vancouver, Ottawa, Toronto). Vancouver Office 395-3665 Kingsway (NW corner of Boundary Road). Call Toll Free 1-866-829-4446; Lower Mainland Residents call 604-629-1919. www.taxwise.ca/taxaid.

November/December 2005 Transition


What is the Price of Not Knowing? Many people with disabilities (and their caregivers) are missing out on valuable disability tax credits and significant refunds. What you need to know Tax legislation and qualifying requirements are now much more considerate of people with disabilities and their caregivers, however, many people are still misinformed about their eligibility for Disability Tax Credits (DTCs). Anyone with prolonged and marked restrictions on their daily activities should investigate their eligibility for unclaimed tax benefits. Many people fail to establish eligibility for tax credits and refunds because they lack professional assistance. This assistance is crucial for maximum results - particularly where family members are involved. Most people with low incomes can transfer eligible disability tax credits (refunds) to a family member who pays taxes. Age and whether you can work is not a factor for qualifying. Children can qualify for DTCs, and benefits, including refunds, can accrue to their parents. Many DTC applications are denied by CRA and financial results are not maximized for a variety of technical reasons. Tax refund claims can apply up to 10 years retroactively for eligible applicants. In a self-assessing system you have to know what to ask for and how to ask for it.

Ask us for a free tax review and find out what you may be missing Finally, there is a service where experienced and concerned accounting professionals will review your medical and tax situations to clarify your options and determine if you qualify for any Disability Tax Credits. This service extends to family and caregivers. The tax review can be initiated by you or a family member. There is no risk, obligation or fee for the tax review. Do not hesitate to take action. Results can be very rewarding.

How to obtain a free tax review

• For a telephone review or personal interview call Toll Free 1-866-829-4446 or 604-629-1919 in the Lower Mainland. • Visit www.taxwise.ca/taxaid to complete and submit a simple profile form. Look for the “Online Tax Review” link.

What our clients have said

“Your work was bang on and it was a real comfort to have such competent service. I am very pleased with the results.” P. Latour “I want to thank you very much for your diligence and very hard work. That [re]fund put us on cloud nine. Our gratitude goes out big time.” O. Stefanik

Attention: Organizations that assist people with disabilities. Call us to arrange for a free Tax Reduc-

tion Clinic for your members. We have worked with many organizations.

Call Toll Free 1-866-829-4446 • Lower Mainland Residents call 604-629-1919 Ken Lagasse Chartered Accountant • Regional Accounting Firm (Vancouver, Ottawa, Toronto) Vancouver Office 395-3665 Kingsway NW corner of Boundary Rd. • www.taxwise.ca/taxaid November/December 2005 Transition

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PEADC Progress Provincial coalition makes headway on equipment and devices. The Minister endorsed the idea of a joint communitygovernment Steering Committee to develop a framework for a provincial program.

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n the last issue of Transition, we reported on the efforts that were being made by the Provincial Equipment and Assistive Devices Committee (PEADC) to convince government to develop a provincial program that would meet the needs of British Columbians for these essential disability supports. PEADC consists of 26 organizations that have been working together over the last 2 years to identify the need and to propose solutions to this urgent situation. On October 20, 2005 PEADC representatives met with the Minister of Employment and Income Assistance, Claude Richmond, to brief him on the extent of the problem in British Columbia. Minister Richmond responded quickly and positively to PEADC’s concerns and agreed that the time had come in British Columbia to take action on the fragmentation and under-funding that has too often denied people with disabilities the equipment and devices that they need to participate in the life of the province. The Minister endorsed the idea of a joint community-government Steering Committee to develop a framework for a provincial program. He also urged PEADC to make a submission to the Standing Committee on Finance and Government Services in order to strengthen support in the Legislature for the message that equipment and assistive devices should have a high priority for funding. Since that meeting, events have been moving rapidly. PEADC made a

submission to the Standing Committee on Finance and Government Services on October 21, 2005, urging an increase of $35 million in funding in order to bring British Columbia’s spending more into line with that in other provinces. Andrew Wharton, the Assistant Deputy Minister of Employment and Income Assistance, met with PEADC on October 26, 2005 to discuss its participation on the Disability Supports Program Working Group and meetings are currently underway to gain the participation of other ministries: Health, Education, Advanced Education and Children and Family Development, all of whom have equipment and assistive devices programs. On the community side, PEADC is expanding its membership to ensure the best possible representation from the community of people with disabilities and is examining ways to enable transparency and accountability in its role on the Steering Committee. Designing a provincial framework for equipment and assistive devices that merges the programs of many ministries and operates within a vision of full participation for people with disabilities is a big responsibility and PEADC is taking this responsibility seriously. These recent developments signify a real breakthrough in what has been a decade-long effort to document the problem. Now it looks as if the community of people with disabilities is going to be part of the solution. Transition will keep you posted on PEADC’s progress in upcoming editions.

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BCCPD UPDATE

Access to Health Award Winners The Health Literacy Network is delighted to announce the winners of this year’s Access to Health awards. Each October, we ask people with disabilities living in BC to nominate a person who has given extraordinary service in: 1) the health care category or 2) the community agency category. The 2005 winner in the community agency category is Melvyn Martin, founder, former president and a current director of the Canadian Reflex Sympathetic Dystrophy (RSD) Network. RSD or complex regional pain syndrome (CRPS), as it is also called, is a chronic pain condition with disabling symptoms that vary from person to person. According to Michelle Huibers, current president of the Network, “Mel is one of the very few advocates for Reflex Sympathetic Dystrophy in Canada and has suffered with RSD for many, many years. … He continues to inform others about recent research, clinical trials, [and] new and old treatment options. He has worked tirelessly to promote understanding of this disorder. Some of his accomplishments have been: the province of BC recognizing July as RSD Awareness Month, organizing and managing an online support group of nearly 150 members with twice weekly chats, annual conferences, [and] fundraising for families with children with RSD.” This year’s winner in the health care category is Agnes Bauer. Ms Bauer recently retired from her work as a community health nurse with Health Services Community Living. She was

November/December 2005 Transition

nominated by Ross Bailey and Richard Wielgosh, participants in the Developmental Disabilities Association (DDA) Main Street Drop-In Centre. They wrote, “She was a very patient, kindhearted and thoughtful nurse. She did things out of her way for us. She will be greatly missed.” Terry Schenkel, assistant director of DDA’s Family Support and Outreach, wrote: “She is known for her dedication, knowledge and compassion.” Doug Lang, who works with the DDA CORE Day Program, wrote on behalf of the CORE staff, “… Agnes has always brought professionalism with a difference. She cares. She exudes positive spirit and goodwill. She truly is a nurse, in the best sense of the word. She has our love and respect.” Congratulations to Mr. Martin and Ms Bauer. You are inspiring examples of our vision of accessible health information and services for everyone.

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Court makes landmark ruling on disability and immigration

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thank you BCCPD would like to thank Lohn Caulder Chartered Accountants for their generous donation of office supplies. Their support is much appreciated!

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n October 2005, the Supreme Court of Canada rendered its decision in the cases of Hilewitz v. Minister of Citizenship and Immigration and de Jong v. Minister of Citizenship and Immigration. The decision is a victory for people with disabilities and their families, and establishes that immigrants with disabilities can become valued members of Canadian society. Justice Abella, writing for the majority of the Supreme Court, noted that Canadian immigration policy has applied “exclusionary euphemistic designations” that concealed prejudices about people with disabilities. The Court directed that Canada Immigration must conduct individual assessments of a family’s immigration application and, as part of this assessment, immigration officials should consider the resources, time, personal and financial supports, as well as community supports, that families are able and willing to provide children with disabilities. The Hilewitz and de Jong cases were launched by two families who wish to immigrate to Canada. Both families were found to be “desirable” immigrants, but their applications were denied by Canada Immigration–because each family includes a child with an intellectual disability. Canada Immigration refused their permanent residency applications on the grounds that the children might cause “excessive demands” on social services.

The decision is a victory for people with disabilities and their families, and establishes that immigrants with disabilities can become valued members of Canadian society. ARCH: A Legal Resource for Persons with Disabilities represented the Canadian Association of Community Living (CACL) and Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO) before the Supreme Court of Canada in both cases. ARCH argued that a fair and respectful assessment of eligibility for permanent residency under the Immigration and Refugee Protection Act must be in line with the equality values of the Canadian Charter of Rights and Freedoms and international human rights principles. Prospective immigrants should be evaluated on a case by case basis with consideration given to their individual needs and potential contribution to Canada, as well as family and community contributions. The CACL and ERDCO intervened in these cases to draw the Supreme Court’s attention to the fact that people with disabilities are being systematically discriminated against by being denied admission to Canada based on negative stereotypes. Visa officers rely on the recommendations of medical officers to determine if people with disabilities will make “excessive de-

November/December 2005 Transition


mands” on Canadian social services. These medical officers base their recommendations on a medical diagnosis, rather than considering the “whole person.” They do not consider what the cost of needed services would be or what a “reasonable demand” might be. Canadian immigration policy, for example, does not exclude immigrants with high-risk behaviours, such as heavy smoking or participation in extreme sports. The CACL and ERDCO pointed out that Canada Immigration fails to consider the positive contributions that people with disabilities make to society, and the important role that families and communities play in providing supports to people with disabilities. Canada offers all new immigrants a broad variety of services and supports which are recognized as necessary to facilitate the integration of newcomers into their communities. The CALC and ERDCO contended that it is inequitable to treat immigrants with disabilities differently, and that immigrants with disabilities should have access to similar supports and services that facilitate their inclusion in society. The CACL and ERDCO are pleased that the Supreme Court of Canada directed that Canada Immigration must not resort to a “cookie-cutter methodology” that simply looks at the immigrant’s disability diagnosis.

November/December 2005 Transition

in memoriam Barbara Rosemary Parson November 28, 1930 - October 12, 2005 People with disabilities lost a great champion recently with the passing of Barbara Parson. Despite several years of debilitating health problems, her enthusiasm and commitment to others never dimmed. During her career, spanning over 40 years as an Occupational Therapist and as a dedicated volunteer for many community projects, Barb was a forwardthinking advocate for the creation of independent living solutions. As a consultant with Vancouver Continuing Care and then a volunteer upon retirement, Barb was especially passionate about the creation of accessible housing projects. Serving as a board member with the BC Paraplegic Association (BCPA) since 1998, Barb was instrumental in the development of Lions Millennium Place, providing permanent accessible housing and transitional suites for individuals involved in rehab programs. She also contributed her expertise and many, many hours toward the creation of such groundbreaking initiatives as the Creekview and Noble House Cooperatives. As a member of the Steering Committee for the Provincial Respiratory Outreach Program, Barb worked closely with many organizations including BCCPD and BCPA to create an outstanding service solution for people requiring assisted breathing. Throughout her life, Barb always approached a problem from the human perspective, leaving a tremendous legacy of caring and community involvement for others to follow.

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Circles of support The accident changed Blake’s life and that of his entire family forever. by Jo Dunaway

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Life changed for the Rossiter family 10 years ago when 21-year-old Blake suffered traumatic brain injury when the Honda Civic he was riding in was Tboned by a truck at 12th and Granville in Vancouver. “Blake was pinned inside the wreck, the impact caused an ‘earthquake’ in his brain, he had swallowed his tongue, and he was actually dead at the scene,” recalls Blake’s father Mike. “He survived because of a number of circumstances: a passenger in the other vehicle pulled his tongue out so he didn’t choke, paramedics were near by, the firehall a block away had the jaws of life, and when he arrived at VGH, only a few blocks from the accident, a neurosurgeon was on duty.” His family, notified at their home in Terrace, flew to Vancouver to begin the ongoing process of learning to relate to the new person their son Blake had become. Gone was the independent, carefree, gregarious 21year-old who had left home to pursue a career as a musician. The accident changed Blake’s life and that of his entire family forever. “We had lived in Terrace for more than 20 years,” remembers Mike. “Both our kids grew up there. I had a successful printing business. But we never really lived there again after the accident. We moved to Vancouver and our whole focus became Blake and his needs.” The first part of the journey was the easiest in some ways. During his

Blake and his father Mike cycling at Kits Beach

three months in Vancouver General Hospital and the following four months in GF Strong Rehabilitation Centre, Blake had “superb services.” When he was discharged from GF Strong, Blake entered King Edward House, a group home for brain injury survivors. “One side of his body was like he had had a stroke and he couldn’t stand independently,” says Mike. “He had short-term memory loss and speech problems. King Edward was a safe place for him and he was learning some skills. But, he was just coming out of a fog and he had a lot of anger. He didn’t talk for the first six months– he would show emotion and blink, but he didn’t talk. The group home was expensive at $6000 a month. And Blake’s wheelchairs cost $11,000–he’s on his fourth chair now. “We had to pay for any extra services because he wasn’t at GF Strong any more. Our money was gone in a year.” In the meantime, Mike travelled back and forth to Terrace wrapping up

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his business, and Blake’s mother and young sister shouldered most of the responsibility for advocating for Blake. “His mother became an absolutely tenacious advocate,” remembers Mike. “She went after every service that could help him.” Nineteen months after his accident, Blake was back in the community living in a subsidized wheelchair accessible apartment near Granville Island. “This was Blake’s choice,” says Mike. “He had always been very independent–it’s a part of his personality that I have always been proud of. He spent a few weeks with us in the family apartment, but he wanted his own place.” Blake’s community came together to support him. “The people in Terrace raised $20,000 for Blake in one night,” says Mike. But there were losses too. “His old friends sort of disappeared– they just didn’t have the tools to cope with the new Blake. He was lonely and a little delusional. He would imagine things and fight with his neighbours. He could pull himself out of bed and dress one-handed and get himself on and off the toilet. But it was a real eye-opener for us all–realizing what a difference the 24-7 care at King Edward had meant. Now, living on his own, we were getting calls in the middle of the night to drive in from Steveston when he would fall out of his wheelchair or when he needed help.” For the next three or four years, Blake and his family carried on this way with his parents trying to line up the

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James–a Registered Rehabilitation professional who works mostly with people who have had brain injuries–has become one of Blake’s main personal supports. services he needed and the funds for him to stay in King Edward House when it wasn’t safe for him to be on his own. Along the way, Blake received a court settlement from the accident.” The estimate for a lifetime of care after an accident like Blake’s is about $10 million,” says Mike. “Blake got about a half million dollars. Fortunately, we had a great lawyer who specializes in brain injury cases and we also got a professional to help with financial planning and management. As his parents, we were appointed official guardians by the court.” Still striving for independence, Blake worked with a real estate agent to find his own apartment. He chose one in the renovated Fields Building on Hastings Street in Vancouver. “His neighbours in the building are a wonderful mixture,” says his father. “Artists, musicians, older people, children. They are very friendly and understanding toward Blake.” Blake was receiving some community services to help with cleaning and shopping, but there were times when his family had to use private beach funds to get him back into King Edward House when he wasn’t able to be on his own. We were watching him degenerate,” says Mike. “His weight was up continued on next page over 200 pounds and he had a lot of

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Circles of support, continued from previous page issues. He was needy and demanding.” That was when the Rossiters put together the circle of support from contacts and relationships they had formed in their years of advocating for Blake. “We had met wonderful people who cared about Blake.” Mike is grateful to two of Blake’s case managers, Brenda Rosenau and Susie Chant, Bonnie Wilson past-manager of GF Strong’s Brain Injury Program, and others too numerous to name. “And, of course, Blake’s mom, Lori, has been

“We have about three hours a day, five days a week together,” says James. “My biggest intervention was to motivate him. his strongest advocate. We knew it was essential to build these relationships. We brought together a group– like a circle of caring friends–to develop a plan uniquely designed for Blake. And this was how we got James.” James–a Registered Rehabilitation professional who works mostly with people who have had brain injuries–

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has become one of Blake’s main personal supports. His 22 hours a week with Blake are managed through King Edward House with funding from Community Health Care and Continuing Care Services, an arm of Vancouver Coastal Health. Working as a team with Blake’s physiotherapist, James has coordinated Blake’s daily program for the past two and a half years. “We have about three hours a day, five days a week together,” says James. “My biggest intervention was to motivate him. He wanted to be more independent and that just wasn’t possible if his physical condition was so poor he had to keep calling for help. I started with him on exercises and movements to strengthen his legs and hips. Once he started to see a difference, he became very determined. Now he has no problem getting in and out of his wheelchair and bed, and he can pick himself up if he falls.” As Blake began to improve physically, it affected his whole life, says James. “The success had a big effect on his personality. His depression, fixations and fears diminished and he started to feel good about himself. This confidence made it possible for him to progress in other areas. He has short term memory problems so I’ve worked with him on techniques like keeping his daily appointment book and making lists of things he needs to do each day. He is getting better at controlling the amount of money he has each week.” Blake is very determined to be independent, says James. He does his own laundry and, although cooking is difficult with one hand, James has shown him how to prepare a number of vegetarian dishes. To lose weight,

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Blake decided to cut the pastries and pizza he loved out of his diet and taped notes to himself on his fridge. He lost 30 pounds in three months. “The physical improvement is most noticeable,” says James. “But Blake has taken control of many areas of his life.” These days when Mike sees his son Blake wheel up Commercial Drive to his favourite coffee bar, he can’t believe what Blake has achieved with the support of James and others. “It’s a huge change from the 200-pound, unhappy guy that we had been dealing with.” His now trim, 170-pound son no longer calls to be helped back into his wheelchair. His love for music has rekindled and he has begun playing his guitar with a music therapist, an exercise that is also beneficial for the spasticity in his hands. “He’s a different person,” says Mike. “Instead of being needy and demanding, he calls family members to see how we are. He loves getting out and meeting people. If you met him, the first thing you’d think is how charming he is.” Mike is adamant that Blake would not be progressing this way if it weren’t for the determined and persistent advocacy work by his family and the relationships that they have built with a variety of caregivers and professionals. “Those relationships are absolutely essential. You have to put together the pieces and always be looking for the service or support that will help the person move forward.” Mike believes that there could be more efficient ways of using funds and services. “It seems that a lot of the

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“The success had a big effect on his personality. His depression and fixations and fears diminished and he started to feel good about himself.” funds and programs are concentrated in the very early days. Many people, like Blake, just aren’t ready at that point to make the best use of them. Everyone unfolds from a traumatic experience at their own rate, so they will need particular services at different times. Blake wasn’t receptive to some of the intervention and therapy until two or three years after it was offered.” Mike has joined with psychologist Lynne Mann to develop written materials and videos about caring for people with brain injuries. For more information, go to www. livingwithbraininjury. com. He also recommends the Traumatic Brain Injury Resource Centre at www.braininjuryresources.org. To be placed on the mailing list for the newsletter Headline, contact Mike at mlr@telus.net.

DEAR EDITOR: Great job with your last edition (Disability Supports: Equipment and Assistive Devices, Sept/Oct 2005). There was lots of important and valuable information on the equipment situation in BC and Canada. A Look Back, on the history of this issue, was interesting and the personal stories, Living at Risk, powerful. They mirror much of what we hear on a day-to-day basis. I look forward to the next edition. HEATHER ARCHER, EXECUTIVE DIRECTOR, PEOPLE IN MOTION KAMLOOPS, BC

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Good news on user fees by Christine Gordon

The regulation now permits home support users between the ages of 19 and 64 years of age who have earned income to increase their earnings exemptions.

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n March of this year there was a bit of good news for people with disabilities who use home support, including the Choice in Supports for Independent Living (CSIL) program, and who work or plan to work in the future. The Cabinet passed an Order-inCouncil amending the regulation for user fees for home support which will limit the amount of fees that can be charged to people between the ages of 19 and 64 who have earned income. The Canada Health Act protects Canadians who are receiving medical care from user fees, but continuing care, which includes home support services as well as residential facility care, has no such protection. User fees are applied according to income and they can rise as high as $67/day. The income that is used to calculate user fees is based upon specific information from the income tax form and every recipient of home support must give consent for the Ministry of Health to access this information or they risk losing their continuing care services. For working people with disabilities who need home support, the user fee has been a strong barrier to employment. As soon as an individual starts to earn income, the user fee is applied and every time there is an increase in income the fee escalates. This has meant that many people who depend upon home support have refused employment or promotions because any financial gains that they might have made could be wiped out by user fee increases. People who are working have not been able to cover the costs of their disability supports

because of the fact that they must pay user fees. Although the user fee has been identified as a barrier to employment in many reports to government over the last decade, no action has been taken. However, beginning in 2003, determined efforts were made by a small group of consumers of home support to resolve this situation. After many meetings and the support of Katherine Whittred, then Minister of Long Term, Intermediate Care and Home Support and Colin Hansen, then Minister of Health Services, several options for change were put forward. The process of moving these options through the channels of deliberation was slow and sometimes threatened to stop altogether. However, the consumers were vigilant in monitoring the process and sustaining their advocacy when the government engines stalled. The option that was accepted by the Cabinet and passed by Order in Council on March 18, 2005 amends the Continuing Care Fees Regulation. The regulation now permits home support users between the ages of 19 and 64 years of age who have earned income to increase their earnings exemptions from the current $15,000 for individuals and $25,000 for couples to $25,000 for individuals and $50,000 for couples. In addition, there will be a ceiling on user fees so that home support clients, including CSIL users, who are aged 19 to 64 and who have earned income will pay no more than $300/month in user fees.

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Local health authorities across the province should have been in touch with all of the eligible home support users in order to recalculate their user fees based upon the new formula effective from March 18, 2005. With this change, the British Columbia government has recognized that working people with disabilities need the opportunity to have a level

playing field that will enable them, like all other British Columbians, to use their earned income to meet their needs and to plan for a secure future. As this issue of Transition demonstrates, personal support is a disability support. It is an essential prerequisite to full participation by people with disabilities. Reducing user fees is one small step to recognize this fact.

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Consent: Please complete this section We/I consent to the use of our/my contact information for the delivery of Transition. Please indicate your choice and initial: YES ____ NO ____ Your initials ______ Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right to privacy and the protection of their personal information. The BCCPD is committed to ensuring compliance with British Columbia’s Personal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personal information it collects about people and why. It will store information securely and identify who has access to the information it collects. It will inform people what information will be shared, with whom, and why. BCCPD Privacy Officer: Mei Ng (604) 875-0188 Alternate: Jane Dyson (604) 872-1278 Email: privacyofficer@bccpd.bc.ca

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November/December 2005 Transition

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Hepatitis C Update by Jane Dyson

An excellent step has been made in victim compensation, but it’s not over yet .

We have reported on the work of the Hepatitis C Compassion Umbrella of Canada (HCCUC) campaign regularly in Transition. The BC Coalition of People with Disabilities is a founding member of this group that is working to expand the federal government’s compensation program so that people infected with Hepatitis C through tainted blood before 1986 and after 1990 are included. Under the terms of the current Settlement Agreement, only those infected after 1986 and before 1990 are eligible for compensation. To date 390 groups have endorsed the campaign, and the number of supporters continues to grow. This level of support is excellent and we

Transition Ad Manager

Anneke Wijtkamp is Transition’s new Ad Manager. She brings with her a diverse skill set in the areas of marketing and public relations. She is looking forward to creating strong partnerships with Transition advertisers and sponsors. If you would like to know more about Transition’s advertising opportunities, contact Anneke by phone at 604-812-8149 or email her at annekew@telus.net.

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recently had some more good news. In November, a Memorandum of Understanding (MOU) was signed by Health Minister Ujjal Dosanjh and representatives for people excluded from the current Settlement Agreement. The MOU commits the federal government to provide compensation to this excluded group. “The Government of Canada recognizes the tremendous burden Hepatitis C places on the lives of people infected and on the lives of their families,” said Minister Dosanjh. “By entering into this MOU, both sides have made a clear commitment to the ongoing negotiation process. The federal government will compensate the pre-1986/post-1990 class because it is the right and responsible thing to do.” Negotiations will continue on the terms of the final settlement including the eligibility requirements and compensation amounts. This process will, unfortunately, take several months. This is an excellent step forward and is in large part due to HCCUC’s founding members and the nearly 400 groups that have supported the campaign to have the Hepatitis C Settlement Agreement expanded. Their support and persistence made this happen. But the campaign is not won yet. We will continue urging the government to progress as quickly as possible with the negotiations so that people with Hepatitis C can finally receive the compensation they deserve.

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The Kids are a hit at the Fringe! Hi! My name is Mark Riley. The other Kids in the Kids on the Block puppet troupe asked me to tell you about our first-ever appearance at the Vancouver Fringe Festival. It was so much fun! We did six performances and made a lot of new friends, big and small. I think the other Kids chose me as spokesperson because I was the first Kid on the Block. I was created over 25 years ago to “introduce” special needs children being mainstreamed into regular classrooms to the children already there. I’m an 11-year-old boy and I have Cerebral Palsy. I use a wheelchair–my “cruiser”–and I wear a crash helmet to protect my great brain. After I was a big hit in the classroom, lots of other puppet Kids were created. One of my best friends is Renaldo who is blind. And Ellen Jane who has Down Syndrome. We really like going to schools and showing the kids that we’re just regular kids too. We do skits that look at the ways we are different and the ways we are the same as other kids. Sometimes we’re pretty funny, if I do say so myself. The kids in the audience can ask us anything they want to know. There are more than 1000 Kids on the Block puppet troupes all around the world. I’m a member of the Vancouverbased troupe, coordinated by the BC Coalition of People with Disabilities. And, we don’t just perform at schools. We like to perform at meetings, conferences and other events. You can call us at 604-875-0188 or kob@bccpd.bc.ca and ask for our Coordinator, Olive.

November/December 2005 Transition

Me, Mark Riley, getting a donor cheque from Vancity’s representative Pamela Ramrup. She was REALLY nice!

Transition would like to thank the many people who helped prepare this edition.

A big thank you to the people who gave their time generously to talk to Jo Dunaway about personal supports: Mike Rossiter, John Neumann and Eddy Morten [thanks to interpreter Brenda Erlandson too!]. And thanks to our contributors: Laurie Beachell, Christine Gordon, Shelley Hourston, Linda Delparte and Jane Dyson. And finally, a big thank you to our advertisers Ken Lagasse, Chartered Accountant; SAFER; and, Faith Hayman, and our Partial Sponsor CUPE.

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The support of a job coach

by Linda Delparte

A successful job coach knows that the person being supported must direct the nature and amount of support provided.

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Job Coaching as a disability support first became popular in the 1970s in North America as a technique to provide initial support for people with learning difficulties to successfully gain and maintain competitive employment opportunities. POLARIS Employment Services Society began offering job coaching supports in 1979. Job coaching is both an art and a science. A successful job coach knows that the person being supported must direct the nature and amount of support provided. And a coach knows they have done a great job when the employer forgets a job coach was part of supporting the new employee to be successful. In that case, the co-workers see the person as just another team member contributing to the workplace. The team sees the skills and abilities, the personality and the uniqueness of the new co-worker. Sometimes a worksite will assign a mentor for the new employee, just as they do for any other employee. And the new employee knows that their boss is the workplace supervisor, not their coach. The job coach’s role varies with every worksite and every person who seeks the support. The coach can assist on or off the jobsite. For some people, the employer may never know about the job coach. Some typical supports might include: • arranging transportation routes to/ from the worksite • checking on clothing, suitable footwear or other work tools

• determining or arranging for any needed equipment or assistive devices • supporting the person during corporate orientation and training sessions on policies, procedures or specific skill training sessions • clarifying performance expectations of quality and quantity creating memory aids if needed • organizing the physical workspace and workflow for maximum results • coaching communication skills needed in the worksite • practising duties and specific work skills or routines • preparing an individual for performance reviews • supporting the development of positive workplace relationships • decreasing coaching to off-site support time and monitoring of progress • being a cheerleader and encouraging people to see their own strengths and abilities

What do customers say about job coaching? Matthew: “I don’t need my job coach any more. I know my job. I know my boss. I know my co-workers.” Sandra: “My boss says I am the best at my job and I know I have to thank my job coach for helping me learn the right way to do my job.” Wendy: “The coach helped me to explain my job responsibilities to my

November/December 2005 Transition


family. My family helps me celebrate my successes.” Ken: “You [the job coach] are helping me to find the words I need to tell my boss about what work I finished today.”

What do businesses say about job coaching? Winners: “The extra support from the job coach gets people started quickly and picks up the pace in learning the policies and procedures of our corporation.” Liquidation World: “The job coach helped our company carve out duties that best suited our new employee and our work demands.” Royal Bank: “The job coaching service is unique and valuable to our operation. We had to re-locate one employee due to changing demands in our company. The job coach came in and helped us to find new duties, retrain and upgrade our employee’s skills.” Real Canadian Superstore: “It was a coordinated effort with our team of managers, the new employee and the job coach to assist the person to learn to perform their duties in an exceedingly busy store.”

“My boss says I am the best at my job and I know I have to thank my job coach for helping me learn the right way to do my job.”

Mary Williams Memorial Core Volunteer Fund The BCCPD has established the Mary Williams Memorial Core Volunteer Fund to support and expand our core volunteer program. BCCPD’s core volunteers provide crucial support to our many programs and Transition magazine. We gratefully accept donations to the Fund; a tax receipt will be issued for all donations of $10 or more. “There is life after disability. I’m not my spinal cord injury and I’m not my wheelchair. I’m still Mary. I have a great quality of life; not just a good one, but a great one.” Mary, April 2001 Please accept my tax-deductible donation of $________ to the Mary Williams Memorial Core Volunteer Fund. Please call me for a credit card donation. Tel: _________ Name _____________________________________ Address ___________________________________ City___________________ Postal Code __________

Thank you for supporting the Fund.

continued on next page

November/December 2005 Transition

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Job coach, continued from previous page

What is new about job coaching? There is a huge growth in Managers and Chief Executive Officers paying for job coaching support to improve their own workplace performance. Private job coaches have been contracted by many Fortune 500 firms to help each management team member to achieve corporate and personal goals.

Job Coaching as a Disability Support: What is missing?

Not unlike other disability supports, job coaching is not readily available. Typically, the federal government through Services Canada sees job coaching as something provided during the first 12 weeks of work–essentially during the 3 month probation period. The provincial government, through the Employment Program for Persons with Disabilities, makes job coaching available for a few hours at the start of a job or not at all. For someone needing job coaching to keep a job, funding support is rare. Businesses are engaging in more mentoring and buddy systems for the successful orientation of any new employee. However, this does not eliminate the need some people will have for more support when learning a new job, or retraining to keep a current job or to expand their workplace responsibilities and advance in a firm. Linda Delparte is Executive Director of POLARIS Employment Services Society. For more information, contact Linda at 2055066 Kingsway, Burnaby, BC V5H 2E7, phone: 604-4301557, fax: 604-430-8693 or email: polarisemployment@telus.net.

CPPD

Disability Benefits

Advocacy Access

About CPP Disability benefits Are you a Ministry of Employment and Income Assistance client? Have you recently been denied CPP Disability? If so we can help you to appeal. Unlike provincial disability benefits, CPPD benefits are not asset tested: there is no limit to the personal assets you can have. Receiving income from other sources (with the possible exception of employment income) will not disqualify you from receiving CPPD. Unlike provincial disability benefits, you will keep your CPPD if you become involved in a dependent relationship, e.g. if you get married. Most people receiving provincial disability benefits will still get a top-up from the Ministry. This means you will not lose your medical coverage and annual bus pass when you qualify for CPPD. You do not have to apply for CPP early retirement benefits at age 60 if you are already receiving CPPD. You can attend school or do volunteer work without jeopardizing your CPPD. If you move to another province your CPPD will go with you. CPPD is taxable, but recipients can apply for the Disability Tax Credit.

Phone Advocacy Access for one-on-one assistance with CPPD appeals, tribunals and Pension Appeals Board cases. Local calls: 604-872-1278 Toll-free: 1-800-663-1278 TTY: 604-875-8835 Thank you to the funders of our CPPD program: the BC Ministry of Employment and Income Assistance

32

November/December 2005 Transition


Dear Transition: How do I support thee? Let me count the ways... We count on your support. Here’s how you can keep Transition’s voice loud and clear.

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Become a Monthly Supporter With your credit card, you can make monthly contributions to Transition easy.

1 Yes, count me in as a monthly donor! Name _________________________________________ Address _______________________________________ City/Province ____________________________________ Postal Code ______________ Phone____________________

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Any donation, small or large, will make a difference–donations over $10 are tax deductible.

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Become a Supporting Friend If you make a donation to BCCPD, it will be dedicated to Transition. Subscriptions Support us by keeping your $20 annual subscription up to date.

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Privacy Statement: The BC Coalition of People with Disabilities (BCCPD) values and upholds citizens’ right to privacy and the protection of their personal information. Our Privacy Code is available on our website at www.bccpd.bc.ca or from our Privacy Officer: Mei Ng (604) 875-0188 or Alternate: Jane Dyson (604) 872-1278 Email: privacyofficer@bccpd.bc.ca.

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3 Please see the Transition Subscription Form in this edition to start or renew your subscription. Please make cheques payable to BCCPD. Send payments and this form to BCCPD at 204-456 W. Broadway, Vancouver, BC V5Y 1R3. You can also donate on line at www.bccpd.bc.ca.

Donor Consent: Please Read & Sign We/I consent to the use of our/my contact information for you to issue our/my donation receipt and for maintenance of the Transition donor list. Please indicate your choice and initial: YES ____ NO ____ Your initials ______ We do not share or sell our donor lists. BCCPD Charitable Reg.#0539544-11

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BC Coalition of People with Disabilities, Suite 204, 456 West Broadway, Vancouver BC V5Y 1R3 (604) 875-0188 • fax (604) 875-9227 • tty (604)875-8835 trans@bccpd.bc.ca

Transition would like to thank the Canadian Union of Public Employees (CUPE) – Partial sponsors of this edition.

http://www.bccpd.bc.ca/docs/trnovdec2005  

http://www.bccpd.bc.ca/docs/trnovdec2005.pdf

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