Community Living - Manitoba www.aclmb.ca

Guides and Documents

A NATIONAL AGENDA TO SUPPORT FAMILIES AND CAREGIVERS

In June 2003, the Federal Government made a commitment to invest $1 billion over the next five years in families and caregivers. This valuable new investment in families and caregivers begins to recognize the contributions of families and caregivers. In Canada , 2.3 million family members provide disability-related supports - with minimal or no financial compensation. Families provide an essential bridge to the realization of citizenship in the daily lives of children, youth and often adults, with disabilities.

Existing tax credits are aimed at offsetting the costs of disability and ensuring tax fairness for families providing support to a family member with a disability. However, these tax credits are limited, and do not begin to compensate for lost economic opportunity or the costs of care where family members are the primary and/or only source of care. For the most part, these are not refundable tax credits and thus are of no benefit to family caregivers living in poverty whose incomes are below the threshold for paying income tax.

The recent Participation and Activity Limitation Survey (PALS) released by Statistics Canada has shown that over one half of parents caring for a child with a disability report that their employment situation has been affected by their need to provide unpaid care to their child. Overall, 33% worked fewer hours; 27% had turned down work in order to provide care; and 17% had turned down a promotion or a better job.

Financial and social supports are essential to maintaining strong healthy families. In order to support and promote the economic security of families providing care to a family member with disability-related needs, specific policy reform must occur.

The commitment to investment $1 billion over the next five years in families and caregivers could assist in the development of a comprehensive Family Caregiver Strategy. Possibilities for a comprehensive strategy are laid out in the Canadian Coalition for Family Supportive Policy, of which CACL is a founding member. Such a strategy would be developed in collaboration with the disability community and could include:

• Reform to Canada Pension Plan - Expand the Drop-Out provisions, and allow for contributions to CPP for those who stay out of the labour market to care for a family member with disability-related needs.

• Reform to Employment Insurance and Canada Labour Code - Provide paid leave, beyond those currently provided for by Parental Leave and Compassionate Leave, for family members who must leave their jobs temporarily and or periodically to care for a family member with disability-related needs. The Canada Labour Code would need to be amended to ensure job security and protection.

• Development of a Family Tax Benefit - Create a refundable tax benefit for family members providing significant levels of support for a family member with a disability

• Development of a National Respite Strategy - Such a strategy would deliver individualized and flexible support package options, giving families a choice and the ability to tailor respite supports to meet their unique needs.

• Development of a Federal/Provincial/Territorial and Aboriginal Investment Strategy for Families - Federal transfer of block funding to expand provisions for disability-related supports based on principles of choice, flexibility, portability and community inclusion and to expand flexible and individualized funding opportunities and planning and coordination supports for families.

• Support for Family Leadership - support capacity development, networking and the sharing of knowledge among families who have a family member with a disability.

A NATIONAL DISABILITY AGENDA

The disability community strongly supports the blueprint for action laid out in the FPT In Unison Accord . There is a shared understanding that disability supports, income and employment are three key issues facing persons with disabilities and their families. These issues are not mutually exclusive, they are interdependent; action that will advance and enhance the active citizenship of persons with disabilities and the security of their families needs to occur across all three areas.

The disability community has remained consistent in its belief that disability supports must be a priority. However, i n the short and medium term it is agreed that income supports and employment supports may be the immediate priority with disability supports being part of the larger strategy.

• Income Security - Despite various income provisions, adults with disabilities or long-term health needs tend to be poor, on fixed incomes (estimates are that about 30% of adults on social assistance have disabilities), and without paid employment. Over 365,000 adults with disabilities have non-reimbursed, out-of-pocket expenses for disability-related supports. Current income measures and tax benefits to support persons with disabilities are inadequate and ineffective; they do not effectively or comprehensively cover disability related costs. The development of a broad and bold income supports agenda could see the Federal Government assume responsibility for income supports; thereby removing persons with disabilities from welfare and social assistance programs and freeing up dollars for Provincial and Territorial Governments to invest more in disability supports.

• Employment - Despite efforts to develop labour market strategies for persons with disabilities at both the federal and provincial/territorial levels, the employment rate of persons with disabilities remains consistently low. According to the International Labour Organization, the annual loss of GDP globally, resulting from the exclusion of persons with disabilities from the labour market, is between US$1.37 trillion and US$1.94 trillion.

A limited number of people with disabilities access some employment support through funding under the Multilateral Framework for Labour Agreements for Persons with Disabilities, leaving no doubt that additional investments in this agreement is required by both levels of government. CACL supports the investment of an additional $30 million in this Agreement but feels it is only one step in realizing an effective labour market strategy for persons with disabilities. Until persons with disabilities can access employment supports through Employment Benefits and Supports Measures, they will remain by and large excluded from the labour force. CACL supports the direction of social economy investments and the intentional effort to create enterprises, opportunities, and networks of ventures that address the realities of people who have been marginalized and at the same time deliver social goods is an important direction.

• Disability Supports - While some disability supports are purchased by individuals or delivered by community services, the bulk of disability supports are currently provided on a voluntary, unpaid, basis by family members, including persons with disabilities themselves. This uneven distribution of support delivery is taxing on family members and persons with disabilities. Without adequate and accessible disability supports, persons with disabilities and their families are being denied their right to participation, inclusion and citizenship. CACL believes the Canada Social Transfer (CST) could be used as a new funding mechanism to support and enhance disability supports.

A STRATEGIC INVESTMENT IN INCLUSIVE COMMUNITIES

Inclusive Communities ensure that all people have the opportunity to engage and participate in their communities. Where barriers exist, inclusive communities transform the way they are organized to meet the needs of all people. It is time we look beyond the mortar and bricks that cities and communities are made of. A new deal for communities must include a new deal for persons with disabilities; this means a commitment to accessible physical infrastructure and inclusive social infrastructure.

CACL believes that a strategic investment in making communities inclusive of people with intellectual disabilities have three priorities:

• A Strategic Investment in Inclusion: Making Community Inclusion a Reality - In 1997, the Government of Canada, through Human Resources Development Canada, now Social Development Canada, joined CACL, provincial and territorial ACLs and People First of Canada (PFC) with a $3 million annual contribution, to launch the Community Inclusion Initiative. The initiative aims to strengthen capacities of communities to include and support people with an intellectual disability and their families in all aspects of community life.

The current Community Inclusion Initiative is in its final year of a three year funding cycle - with funding approved only until March 31, 2005. The positive impacts of this valuable initiative have been felt in over 500 communities across the country and in the - partnerships that the CACL Federation has built with community and government organizations through this initiative. These many partners in inclusion have clearly stated to CACL the desire and necessity for this initiative to continue beyond March 2005. CACL is seeking, as a priority, support for a new phase of this initiative that would focus on creating long-term policies and practices for community inclusion.

• Deinstitutionalization - Despite a public commitment by the Government of Canada, and all provinces and territories, to implement a policy of deinstitutionalization and community living, over 20,000 Canadian citizens with intellectual disabilities remain in health related institutions such as Seniors facilities, Nursing Hones, acute care hospitals, Long Term Care facilities and Personal Care Homes, as opposed to ordinary homes in the community. Of these, more than 12,000 persons remain trapped in institutional facilities designed specifically to house persons with intellectual disabilities. They are there not by choice, but rather due to a lack of efforts in this country toward creating the necessary planning supports, and needed community supports and services, to enable their return to the community. An inclusive cities and communities agenda needs to assist in transitioning from exclusive outdated institutional systems of support to inclusive and enabling community-based systems.

• Communities Transition Fund - This fund would support strategic initiatives to support local communities transitioning from exclusive and outdated institutional models of support, and barrier-ridden communities, to inclusive and enabling community-based systems . We recommend that the Government of Canada provide an initial investment of $5 million for the year 2005- 2006 to launch this program.

CHILD CARE AND CHILDREN WITH DISABILITIES - BUILDING AN INCLUSIVE NATIONAL CHILD CARE STRATEGY

Increasingly, it is known that children with disabilities are amongst the most vulnerable and excluded populations in Canada . We need to prioritize investments in building an inclusive children's public policy agenda in order to meet the social development needs and aspirations of children with disabilities and their families. Of particular importance to children with disabilities is child care and early learning, as part of a lifelong learning strategy, and disability supports.

Childcare and early child learning has been a central focus of the federal government for the last four years. It is an important initiative and it is essential that these investments be inclusive of all children. Disability supports are instrumental in ensuring that children with disabilities can be fully included at home, at school and in their communities. Children with disabilities are denied their right to full citizenship and participation when they are unable to access all the specialized aids they require.

• Child Care and Early Child Learning - On March 13, 2003 , the Government of Canada signed the Multilateral Framework Agreement on Early Learning and Child Care. This initiative builds on the September 2000 First Ministers' commitment to improve and expand early childhood development programs and services. The initiative identifies inclusion as a main principle and its objective is to further promote early childhood development and support the participation of parents in employment or training by improving access to affordable, quality early learning and child care programs and services. Funding for this initiative is a collaborative effort between federal/provincial/territorial and aboriginal governments.

Despite the recognition of inclusion as a main principle in the Multi Lateral Framework Agreement, families of children with disabilities continue to struggle to find quality, appropriate and inclusive child care. Although the Framework recognizes inclusion as a main principle and commits to public reporting, inclusion is not built in to the details of the agreement. Further, indicators and measures for inclusion of children with disabilities are not required in reporting. Without inclusion indicators there is no accountability to ensure that the principle of inclusion is translated in to practice.

• National Child Care Strategy - Prime Minister Martin has been clear that the development of a national child-care initiative will be a priority. As with the Multilateral Framework Agreement on Early Learning and Child Care, it is essential this programme be based on the principle of inclusion and that the accountability framework for this programme include measures and indicators of inclusion and a commitment to publicly report on inclusion, to ensure that this key principle translates in to practice. It is important that government officials engage with civil society in the development of this valuable initiative and its implementation. The inclusion of children with disabilities in a national child-care strategy must be meaningful and contribute to lasting, life-long patterns of inclusion.

• Disability Supports - The recent PALS release indicated that slightly over one-half of children with mild to moderate disabilities do not have all the specialized aids they require. For children with severe disabilities, the percentage increases to 73%. These numbers are unacceptable; the result is their exclusion from ECD programmes, education, recreation and other community opportunities. The Government of Canada needs to commit to ensuring that all children have access to the aids they require.

CANADA AND THE WORLD - DEFINING AN INCLUSIVE APPROACH TO DEVELOPMENT

Canada 's strong human rights history, grounded in social democracy and consensus, offers a solid foundation for promoting inclusion and puts Canada in a position to provide necessary leadership for developing a socially cohesive and inclusive global environment. Given this historic role, Canada with its unique approach to human rights and inclusion, has a responsibility and an opportunity to reflect these values as well as a vision of an inclusive world in its foreign policy.

Canada should support and promote inclusive global development in its positions on diplomacy, trade and aid. Inclusive global development is required to ensure that the benefits of global development and globalization are equally distributed and inclusive of marginalized populations. Canada is an innovator in foreign policy, aid and development - providing global leadership in disability will contribute to defining Canada 's place in the world.

• Making Disability a Focus in Foreign Policy - Canada 's interpretation and articulation of the human rights of persons with disabilities provides a model for both inclusive policy as well as community inclusion programming. Moving forward, Canada can continue to lead the pack for inclusion by incorporating disability in a crosscutting fashion throughout its international involvements and foreign policy. Canada 's success in developing policies and programmes that support the inclusion of persons with disabilities demonstrates that a country can both invest in economic, social, cultural and political rights and still be a leader in the global economic arena.

Canada has much to offer in the quest for sustainable and equitable development and poverty alleviation. Inclusive development that addresses the systemic issues of inequality that prevent marginalized populations from the benefits of globalization is the Canadian approach. International organizations such as the World Bank, the International Monetary Fund, and the Inter-American Development Bank are all looking to understand the impact and consequences of disability. Canada can provide them with strategic policy direction that promotes the inclusion of all persons.

• Advancing the UN Convention on the Rights of Persons with Disabilities - Canada 's involvement with the UN Convention on Disability represents an opportunity for Canada to showcase its leadership on disability issues. For persons with intellectual disabilities and their families the Convention provides an opportunity to develop an aspirational document with a vision for the future and that can transform the way in which our societies are structured and organized in order to be inclusive. We urge the Government of Canada to consider the proposed Convention as a tool for future generations, one that will stand the test of time and point the way toward progress, not one that will inadvertently institutionalize the status quo.

• Achieving International Initiatives - Today's global arena represents a unique opportunity for Canada to be exporting its model of social inclusion. The UN Convention on Disability, A World Fit for Children, The Millennium Development Goals, and regional agreements such as those developed at the Summit of the America 's are all areas that Canada can positively influence inclusive development. An inclusive approach to these international initiatives is essential in ensuring their success. Increasingly, international organizations and states parties are beginning to realize that without the inclusion of persons with a disability and their families, many valuable international initiatives will remain unattainable.

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