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Treat People With Disabilities as Whole Persons, Not Charity Cases

TORONTO It's time for Canada to step up to a whole new approach to persons with disabilities, says a new research report from The Roeher Institute at York University. Moving 'In Unison' into Action says Canadians need a comprehensive, coordinated and portable support system that treats persons with disabilities like whole persons and full citizens instead of charity cases and client folders.

"We have come a long way. We have broken with the Victorian model of charity, pity and exclusion," says Roeher President Cameron Crawford. "We have made the commitment to the human rights, citizenship and inclusion of people with disabilities and taken the first steps. Now, it's time to move up to the next level: respecting persons with disabilities and their families as active experts on their own lives and placing them at the center of support systems rather than simply on the receiving end."

Moving 'In Unison' into Action: towards a policy strategy for improving access to disability supports is The Roeher Institute's direct response to In Unison: A Canadian Approach to Disability Issues, the 1998 joint accord of the federal, provincial and territorial governments that calls for a new "policy blueprint" for people with disabilities. The Roeher Institute, founded in 1970, is a leading policy-research and development organization dedicated to disability issues.

The Roeher report shows that large numbers of people with disabilities are not receiving the supports they need. "The consistent message from focus groups across the country is that without adequate supports and services, particularly around transition points in their lives, people with disabilities and their families endure unnecessary hardship and are disenfranchised from full and active participation in the social and economic lives of their families, communities and country."

Moving 'In Unison' into Action calls for more resources for supports for persons with disabilities and more effective use of resources through a customer-driven coordinated policy strategy. In this new approach, persons with disabilities and their family members are empowered to exercise the best options for their own needs from a range of choices. In the current system, persons with disabilities have to try to fit into a bewildering array of different programs with eligibility criteria that typically restrict rather than improve access -- if the support or service is even available.

"All the stakeholders government and non-government, persons with disabilities and their families, federal, provincial and local agencies and authorities have to work together to come up with a fluid, seamless, national system that cares for the whole life of the person and offers them appropriate levels and kinds of support throughout their changing lifespan," says Crawford. "If we're serious about equality, inclusion and respect for persons with disabilities, we have to replace the existing fragmented, piecemeal system that puts so much stress on those it seeks to serve and that so notoriously allows persons in need to fall through its cracks."

For example, the current system tends to break down just when it is needed most by persons with disabilities at key transition points in their lives. This may be the transition from diagnosis to living with disability, from elementary to high school, or from living with parents to living independently. "Lack of support specific to disability is for many people inseparable from social and economic exclusion unemployment, poverty and isolation," states the report.

The Roeher Institute calls for co-ordinated, empowering policy actions at three levels: persons with disabilities, their families and their communities. Many individuals simply don't have the disability supports they need. Most at need are those who have moderate to severe disabilities; low income; little employment income; are not attached to the disability income-support or benefit system; and are of working age.

Family members are the backbone of the disability support system in Canada, accounting for 73% of all care providers. They need better financial support, more flexible employment options, improved access to support and services in their communities and, above all, they need a break. Respite care is a priority need for many families who are 'on duty' 24 hours a day,365 days a year. As one parent put it: "Only the professional is given a chair to rest on."

Inadequate resources for the disability sector at the community level is a key finding. "This has led to a shortage of trained voluntary and paid disability specialists, to delays and gaps in the availability and delivery of supports and services and accessible community infrastructures, and to a lack of capacity of local NGOs to engage in disability-related work."

As the Canadian population ages and as Canadians live longer and independently, the issue of disability supports will grow in importance, says Roeher research director Mary Anne Burke.

"People with disabilities are still marginalized in Canadian society, but this is not a marginal issue. It's totally mainstream. Disability directly affects almost one in five Canadians," says Burke. "Individual levels of disability change throughout the lifespan, but so do the individuals. Evidence shows that about three in 10 persons with disabilities in a given year do not have a disability the next year and vice versa. We're dealing with a fluid population and we need a fluid support system to respond to their needs."

For more information or a copy of a report contact:

Cameron Crawford, President or Mary Anne Burke, Director of Research The Roeher Institute Kinsmen Building York University 4700 Keele Street, Toronto, Ontario, M3J 1P3 Canada. Tel: 416.661.9611 or 1.800.856.2207 TTY: 416.661.2023 Fax: 416.661.5701 Email: info@roeher.ca Web site: www.roeher.ca

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