If you pass a law to prevent discrimination against persons with disabilities, how do you know whether it鈥檚 being enforced, let alone making a difference?

Marcia Rioux (right), director of the 91亚色 Institute for Health Research (YIHR) and professor in the Faculty of Health鈥檚 School of Health Policy & Management, is working internationally, particularly with countries with limited resources, to develop a unique and innovation solution for the reporting requirements set out in the United Nation鈥檚 .

The United Nations requires all governments that have ratified its Convention on the Rights of Persons with Disabilities 鈭� as Canada did on , 2010 鈭� to provide information on the measures they have taken to integrate persons with disabilities into their societies. But this reporting is often limited to cataloguing laws, policies, and programs that may have little impact on the day-to-day lives of the people they鈥檙e intended to help.

Disability Rights Promotion International (DRPI), a multi-year international collaborative project, is establishing a global monitoring system to address disability discrimination. The research project, based in YIHR, is led by Rioux and Bengt Lindqvist 鈭� a former Cabinet Minister in Sweden, former UN Special Rapporteur on Disability, and long-time activist on disability rights. The team includes a group of 91亚色 researchers and international colleagues who are creating a roadmap that will allow countries to evaluate their laws, policies and programs to comply with the United Nations鈥� standards.

鈥淐ollecting and reporting on evidence-based data forces governments to acknowledge that the challenges people with disabilities face are not just anecdotal,鈥� says Rioux. 鈥淥ur project allows evaluation to happen within the context of the experiences of people with disabilities to objectively measure where discrimination is now while developing and tracking solid trend data to determine if and how things are getting better.鈥�

In September, the Africa Regional Monitoring Centre opened its doors in Kigali, Rwanda and will act as a focal point for disability monitoring and reporting in the region. Agreements with centres in Asia Pacific, Eastern Europe and Latin America are expected in the near future. The (SIDA) awarded the research team over $2 million in 2009 to open the four regional centres.

Each centre will act as a focal point for monitoring disability rights in that region, and will play a key role in empowering local people with disabilities to lead disability rights monitoring projects. 鈥淩egional monitoring is most sustainable when local people are involved since it puts long-term roots into the community,鈥� says Rioux. 鈥淭he vast majority of disabled people around the world face endemic poverty 鈭� many don鈥檛 have jobs or go to school or have basic literacy skills. Engaging people with disabilities to lead this process is a more holistic approach to addressing the challenges they face, both as individuals and a collective.鈥�

When all four centres are operational, Rioux anticipates that hundreds of people with disabilities will be engaged in disability rights monitoring activities. The centres will host training on what disability means as a human right, how to collect data and conduct evidence-based research, and how to write and file human rights reports. Groundwork is also being laid to connect monitors with disabilities to other local rights-seeking groups, such as religious-based, race-based and gender-based, to get them coordinating their efforts together instead of separately.

"The Faculty of Health鈥檚 worldwide research aims to help people live healthier lives while co-creating rejuvenated health systems,鈥� says Harvey Skinner, dean of Health. 鈥淧rofessor Rioux's research is an excellent example of how 91亚色 University is on the front line of our increasingly complex, simultaneously global and local world."

Previous phases of this project focused on developing and piloting tools and methods to monitor disability rights. In 2006, the Social Sciences and Humanities Research Council of Canada ()鈥檚 Community-University Research Alliances program provided Rioux and her team with just under $1 million to fund Monitoring the Human Rights of People with Disabilities in Canada, which is currently in its last of five years.

In 2008, Rioux also received a two-year $40,000 grant from to research disability and social, economic and cultural rights. She has also received funding from the , and been invited to consult with governments and disabled persons associations around the globe to discuss disability rights. Recently, she and her team wrote the chapter on disability rights monitoring for the .

鈥淧rofessor Rioux鈥檚 disability rights research reflects both the value 91亚色 places on social justice and her expertise in leading large-scale collaborative research projects of international significance,鈥� says Stan Shapson, vice-president research & innovation. 鈥淭his type of knowledge mobilization is a crucial step in making governments more accountable for the social policies they set, and reflects the social input that鈥檚 possible when expertise is globally shared.鈥�

By Elizabeth Monier-Williams, research communications officer.

The post Researchers creating international global rights-monitoring network for persons with disabilities appeared first on Research & Innovation.

"There are better ways of doing many things regarding long-term residential care, more creative ways,鈥� says Armstong. She is confident that the study will come up with ideas on how to improve conditions for workers and residents. 鈥淟ong-term residences need to be a positive option, not the last resort as it now seems to be in Canada."

Armstrong聽says people feel聽shame when they have to admit a family member to a long-term care facility. 鈥淧eople see long-term care as a failure of themselves, their family and the health-care system. The main goal is always to keep them out of long-term care homes, rather than saying how can we make them attractive interesting places to be and work.鈥� People are apologetic for not being able to care for their loved ones at home, but home care is not necessarily ideal either,聽Armstrong says. There can be issues with caregiver burnout and elder abuse, and it鈥檚 often just not a viable option as many women 鈥� still the main caregivers 鈥� work full time.

Right: Pat Armstrong

鈥淗ow we treat this vulnerable population and those who provide their care is a critical indicator of our approach to equity and social justice, as well as to care,鈥� says Armstrong. 鈥淟ong-term residential care is a barometer of values and practices.鈥� It raises questions regarding fundamental human and social rights, the role of the state, as well as the responsibilities of individuals, families and governments.

"Reimagining Long-Term Residential Care: An International Study of Promising Practices" is a seven-year project with $2.5 million in funding from the 鈥檚 program. Armstrong will lead an international team of researchers seeking to identify the most promising practices for long-term residential care, ones that treat both providers and residents with dignity and respect. The team is less interested in pointing out what鈥檚 broken in the system, than in coming up with promising practices to improve it.

Up until now, there has been little research on residential care in Canada or elsewhere聽that has taken聽this kind of聽approach, says Armstrong. What has been done tends to focus on issues such as patient abuse and under-staffing rather than on聽issues related to gender and diversity, the relationship between the conditions of work and conditions of care or on policies that will lead to quality care. Meanwhile, the need for long-term residential care in Canada is expected to grow in the face of psychiatric, chronic care and rehabilitation hospital closures, the shift in hospital focus to short-term acute care and outpatient services, and with an aging population, she says.

The research team, which includes physicians, architects, sociologists, philosophers, social workers, historians, political scientists and economists, along with representatives of competing interests, such as employers and unions, will compare practices in Canada, the United Kingdom, the United States, Norway, Sweden and Germany.聽They will look at four different themes 鈥� work organization, accountability, approaches to care, and financing and ownership.

Left: An elderly woman sits by a window. Photo by Chalmers Butterfield.

In the area of work organization, researchers hope to find care models that better meet the needs and balance the rights of residents, providers, managers, families and communities. Under accountability, they are looking for structures which nurture care and inspire quality workplace relations. They will also investigate financing and ownership models to identify the contexts, regulations, funding and conditions that allow residents and providers to flourish and that ensure equitable access to quality long-term residential care.

鈥淲e鈥檙e hoping to get the pieces of a kind of mosaic to guide us to a better place for all the countries鈥o producing an integrated picture of long-term residential care and how to do things differently,鈥� says Armstrong. 鈥淚n many ways, the approaches to care are the most important.鈥� In this country, the emphasis seems to be more on finances, but it is imperative that approaches to care provide a viable, desirable and equitable option for individuals, families and those who provide care. Both providers and residents need to be treated with dignity and respect in the approaches to care, she adds.

The plan is to have researchers work in all four thematic areas, not just their area of expertise, to help generate new ideas and novel ways of approaching problems. 鈥淚 emphasize the ideas because we're not just thinking about the residents, but the families, the workers and the governments,鈥� Armstrong says.

Long-term care raises many complex issues dealing with gender, diversity, aging, sexuality and providing medical care once the domain of hospitals. Typically, long-term care residents have been mostly women, currently about 80 per cent, but the number of men in care has increased. So has the number of younger people needing constant care and not served by a hospital. Most care workers are also women, many of whom are from racialized communities. Trying to find the most promising practices is not an easy task and one size will definitely not fit all, but at the same time there is much room for improvement,聽Armstrong says.

Armstrong, who holds a Canadian Health Services Research Foundation/Canadian Institutes of Health Research Chair in Health Services & Nursing Research, expects the project to create readily usable research.

鈥淲e hope the research will make a difference long before the project is done.鈥�

Armstrong is a professor of sociology in the Faculty of Liberal Arts & Professional Studies and an executive member of both the 91亚色 Institute for Health Research and the Graduate Program in Health Policy & Equity.

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