Disability White Paper Consultation Submission from Inclusion BC March 2014 BC Provincial Disability White Paper Consultation Submission from Inclusion BC March 2014 Contents About Inclusion BC Framework of the submission A Rights-Based Approach Core values and principles Recommendations: 1. Innovation in disability services and more freedom for persons living with disabilities 2. Personal supports, aids and devices 3. Work and contribution 4. Housing and accessibility 5. Social networks 6. Asset accumulation through the Registered Disability Savings Plan Conclusion About Inclusion BC 1 Inclusion BC is a provincial non-profit organization of individuals, families and over 70 member organizations committed to advancing rights, building awareness and inspiring action to ensure full rights, citizenship and inclusion for people with developmental disabilities. We are a federation working with partners to build community and to enhance the lives of children and youth with special needs, adults with developmental disabilities, and their families. Formerly the BC Association for Community Living, Inclusion BC reflects the long and proud legacy of the community living movement in British Columbia – of the parents who organized to educate their children when the doors of public schools were closed to them, and of the families that worked to shut down the institutions which labeled, marginalized and oppressed people with developmental disabilities in British Columbia. The parents who dreamed of a better life for their sons and daughters founded Inclusion BC. They wanted their children to learn in school, have friends, and be welcome in their communities. A snapshot of key moments in the history of individuals, families and Inclusion BC can be seen in the Over the Years timeline, on page 18. Over the past 59 years, Inclusion BC has grown to include numerous member agencies, families and individuals, all committed to making sure that people with developmental disabilities are supported to enjoy their right to lead active and productive lives in their communities. Advocacy support, education and training, network support, systems change, advancing rights, social justice and public awareness are the cornerstones of Inclusion BC’s work. We are the provincial affiliate of our national federation, the Canadian Association for Community Living (CACL), and through it, Inclusion International – reflecting the grassroots to global span of the community inclusion movement, in British Columbia and beyond. Framework of the submission This submission sets out Inclusion BC’s response to the province’s Disability White Paper consultation. The consultation aims to examine a framework which would enable British Columbia to become the most progressive jurisdiction in Canada for people with disabilities and their families, a goal that we share. The province has enumerated four key questions which we examine in this submission: 1. Why do you think it is important that we reduce barriers and increase accessibility for people living with disabilities in BC? 2. What can British Columbians do to welcome the contributions of people with disabilities and what barriers can we remove? 3. What would make it easier for people with disabilities to work or contribute to the community? What needs to be in place? 2 4. What would BC look like as the most progressive place in Canada for people and families living with disabilities? Participants are invited to examine up to six areas: 1. 2. 3. 4. 5. innovation in disability services and more freedom for persons living with disabilities personal supports and aids and devices, work and contribution, housing and accessibility, social networks and asset accumulation through the registered disability savings plan using these key questions. Inclusion BC welcomes the province’s consultation process and the opportunity to submit this paper, as there are many critical questions and important issues to examine to ensure a truly inclusive life for all people with disabilities in British Columbia. A Rights-Based Approach: The UN Convention on the Rights of Persons with Disabilities There has been a significant paradigm shift over the last 20 years in attitudes and approaches to persons with developmental disabilities. This is a shift away from segregation, institutionalization and labeling towards recognizing human rights, prioritizing social justice and human potential, centering on the individual person, full citizenship, community inclusion, contribution, and deepening relationships and networks. John Lord describes this as “The New Story,” with the person at the centre of their story and their gifts and capabilities welcomed in their rightful place as a citizen. Their voice is strong and supported to express what is most important to them. Approaches are personcentered and systems are flexible and responsive. To the contrary, approaches that are deficit-based, opportunity poor, institutional in structure and thinking, and disempowering fail individuals, families, and our society as a whole. In 2010, Canada ratified the United Nations Convention on the Rights of Persons with Disabilities. The UN Convention acknowledges a social model of disability, that it is constructed in an interaction between a non-inclusive society and a person. Attitudinal and environmental barriers hinder people with disabilities from “full and effective participation in society on an equal basis with others.” The UN writes that the Convention “takes to a new height the movement from viewing persons with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.” 3 The Convention gives universal recognition to the dignity and rights of persons with disabilities. The principles of the Convention include: Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; Non-discrimination; Full and effective participation and inclusion in society; Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; Equality of opportunity; Accessibility; Equality between men and women; Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Inclusion BC sees the UN Convention as a central, powerful and appropriate framework – in line with Canada’s legal responsibilities and obligations – to apply when examining and measuring the current status of supports and services for people with developmental disabilities or envisioning a truly inclusive and progressive future. Core Values and Principles Inclusion BC is driven by organizational values and principles that focus on a rights-based, social justice-oriented approach to building communities and societies that are truly inclusive of people with developmental disabilities. These organizational values guide the work of Inclusion BC and the policy recommendations made below in this paper. They include: the assurance of life, dignity and respect for all that children are best nurtured by a family that knows, loves and honours them for who they are that all children have the right to be educated in regular classrooms with appropriate levels of support 4 that adults have a right to choose where and with whom they will make a home that relationships and friendships are essential to enrich our lives that all people have the dignity of taking risks that all individuals are entitled to enough money to have a reasonable quality of life that all individuals are entitled to the services and supports required to ensure their full participation in our society that real work means real pay that each person can determine their own needs and make their own decisions, and when necessary, must receive the support to do so that the involvement of families and support networks contributes to everyone's safety and well-being that services and supports must be delivered in a way that respects an individual's diverse history, culture, race, religion and sexual orientation that remembering and sharing our history will help guide and build our vision for the future. We draw upon these core values and principles in determining and shaping our recommendations to this consultation process. 5 Recommendations Inclusion BC’s recommendations are informed by the social policy positions developed by its Board of Directors and on resolutions passed by voting members of Inclusion BC, as well as current thinkers and policy makers in the disability sector. 1. Innovation in disability services and more freedom for persons living with disabilities. Innovation, the practice of applying new learnings and strategies to change systems, issues, problems and routines, is a key principle in developing modern, responsive and personcentred supports and services for people with developmental disabilities in British Columbia. In our province, innovation has always stemmed from the community: from the families who first formed the community living movement when their children were excluded from school, and then fought to free their children from institutions, to the self advocates who demanded to be heard in their own voice and to determine their own future, to the community organizations that innovate in practice on a daily basis and have shaped internationally ground-breaking supports in housing, employment, and community inclusion. People with developmental disabilities face challenges as a result of a myriad of factors, such as an inflexible and discriminatory medical model disability system, societal attitudes, inappropriate supports and services, lack of real accommodation and government bureaucracy and barriers. Supporting innovation in British Columbia means supporting and empowering people with developmental disabilities, families, and the community to innovate and move toward the future with practices that are truly person centred and fully supported. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) embraces the vision of the community-based innovation that has driven the movement for disability justice in British Columbia. Innovations can, should, and must, in the words of the Convention: “recognize the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support”; “recognize the diversity of persons with disabilities”; “Recognize the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices.” 6 The General Principles of the Convention underlie the necessary approach: Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; Non-discrimination; Full and effective participation and inclusion in society; Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; Equality of opportunity; Accessibility; Equality between men and women; Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Signatories to the Convention, such as Canada, agree to take on the responsibility to: “undertake or promote research and development of universally designed goods, services, equipment and facilities...”; “undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies….for persons with disabilities” In addition, as the core of innovation is to be found in further developing and meeting the standards of the UN Convention in all areas of life, the basis of innovation in British Columbia should rest on key principles of the UNCRPD, including the right to education, to live independently and be included in the community, the right to life, the right to quality and equal health, the right to free and equal participation in employment, the eradication of poverty, and the rights of children, women, and minority groups who also have disabilities. RECOMMENDATIONS: 1. Close all institutions. One of the primary achievements of innovation created by families and self advocates, and the cornerstone of any vision of meaningful inclusion for people with developmental disabilities in British Columbia, is deinstitutionalization and ensuring that no new institutions, or institutional models, are used or built. This principle applies equally to institutions operated by the Ministry of Health or Health Authorities (eg, George Pearson Centre). 7 2. No new admissions. The Province of British Columbia must ensure that admissions to George Pearson Centre and any similar institution are ended and that any redevelopment on the site includes no institutional or congregate models in any form but that all residents of George Pearson Centre are appropriately supported to live in the community. 3. Adequate and timely funding. In order for innovation to truly blossom, resources must be invested to ensure people are fully supported. All children, youth, adults with developmental disabilities and their families in BC should receive adequate and timely funding and support to be fully included in their community regardless of the severity of their medical support or other needs, as an equal citizen. 4. Support community agencies. Community agencies have been and remain centres of innovation since they were founded by small groups of parents seeking to break down the barriers that denied their children education and locked them away in institutions. Community agencies lead in developing truly person-centred, individualized, diverse supports and services, and should be fully funded, honored and supported to do so by the provincial government. Innovation must not be sacrificed to inappropriate and ineffective procurement practices or other funding policies. This includes fully funding all current and previous contracts in the sector. 5. Strengthen individualized funding. Individualized funding is a model that has a great deal of promise for truly individualized, person-centred planning and support. Yet relatively few families and individuals take the opportunity to access individualized funding in our province. Individualized funding should be available to all those individuals and families who wish to use it and access must not be limited based on perceived capacity, or by overly bureaucratic systems that create undue barriers. Cross ministry collaboration must also be routinely applied and funding must be based on meeting individual needs/demand-based, and not on pre-defined or arbitrary limits, and should not hinder or prejudice the availability of services traditionally provided by community based organizations. Where needed, support should be provided to individuals and families receiving individualized funding to manage financial and human resources. 6. End the use of restraint and seclusion in schools. Educational innovation is also key to a good life for people with developmental disabilities. Children are being hurt in British Columbia schools due to the ongoing use of aversive practices, including restraint and seclusion. The Ministry of Education must develop and implement: a requirement that all forms of restraint and seclusion are documented and reported to the Ministry, and a Ministerial Order stating that the use of restraint and seclusion in all BC schools is prohibited. 8 2. Personal supports and aids and devices Despite the development in person centred and individualized planning in British Columbia in past years, many families and people with developmental disabilities continue to struggle to negotiate government bureaucracies, or do not receive adequate supports and services. Waitlists continue to be a fact of life for too many individuals and families, including those who receive partial supports or services. Planning has helped to shape and develop dreams for the future, but practical funding is necessary to ensure that those dreams can become a reality. Transitioning from youth to adulthood continues to be a time fraught with barriers and bureaucracies for many young people and their families. Despite the development of the Cross Ministry Transition Planning protocol, families and young people continue to face roadblocks, do not receive adequate funding, and are not fully supported as they enter adulthood. Transition navigation and planning continues to be a major concern for families of younger children as they look forward to the future. Waitlists and underfunding are a common, unfortunate and costly experience for families throughout their lives. Indeed, for families of young children, many not only face concerns for transitions in the future, but also for the present: waitlists for early intervention and other earlier childhood services or supports continue to place barriers before one of the most effective and important supports for a future of inclusion in the community. While there are many important success stories for people with developmental disabilities in British Columbia, and these must and should be celebrated, these success stories must also propel the province to ensure that every individual has the support to achieve such success throughout their lifetime. The UNCRPD notes that signatories have the responsibility to ensure: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community,” and “An inclusive education system at all levels and lifelong learning directed to…the development by persons with disabilities of their personal talents and creativity as well as their mental and physical abilities, to their fullest potential.” 9 RECOMMENDATIONS: 1. Full funding is a necessity. Community Living BC must be fully and adequately funded to meet the needs of people with developmental disabilities in British Columbia. Funding is a barrier for far too many individuals and families to achieving the full potential of inclusion, and this cannot be the practice in the most progressive jurisdiction in Canada. 2. Ministries must work together to support transition. Cross-ministry transition planning practices must be further coordinated and strengthened to ensure that every young person is fully and appropriately supported in this process. We support the expansion of the mandate of the Representative for Children and Youth to include transitioning youth with developmental disabilities until age 24, and it must receive ongoing allocation of resources to ensure this mandate is truly supported. 3. No more waitlists. Ending waitlists and request for service lists must be at the top of the province’s agenda for people with developmental disabilities, to ensure that all people have access to full inclusion and citizenship. 4. Early intervention must be a priority. In particular, early intervention and early childhood services must not be waitlisted and must be fully funded so that each child eligible for these services can receive the life-long benefits of early intervention for educational success and an inclusive life in the community. 5. End the use of IQ for service eligibility. IQ is an arbitrary measure of support needs for people with developmental disabilities. The IQ 70 requirement to receive services funded by CLBC should be replaced in favor of an individual needs-based model. 6. Fully support inclusive education. Inclusive education for children and youth with special needs is a personal service to every student in British Columbia. All students should receive the help and support they individually need to achieve meaningful educational outcomes in inclusive settings in our schools; a cornerstone to inclusion throughout one’s life. 3. Work and contribution People with disabilities face serious systemic and attitudinal barriers to accessing employment opportunities and earning an independent income. People with developmental disabilities want to work, yet they are significantly under-represented in today's workforce. The province has dedicated significant resources to the Community Employment Action Plan and other employment initiatives, important steps toward supporting real work for real pay and truly inclusive workplaces for people with developmental disabilities. 10 Employment is a route out of poverty and a mechanism of inclusion and contribution for all people, including people with developmental disabilities. The province’s support and leadership in essential employment initiatives is critical in changing attitudes and opening employers’ doors. Adequate investment must be made at all levels to ensure employment initiatives like the CAEP are successful in creating real, sustainable employment for people with developmental disabilities. Many adults with developmental disabilities, facing barriers to employment, require income support to meet basic living costs. BC’s current income assistance rates for people with disabilities fall well below the poverty line, resulting in many people with developmental disabilities in BC living in poverty. This is unacceptable. Furthermore, programs that keep people with developmental disabilities poor is a false economy. Living in poverty increases the risk of physical health problems due to inadequate nutrition, housing and access to health care. The social effects of poverty, including isolation, loneliness, and alienation from community life, contribute to both physical and mental health problems. The savings created by limiting access to disability supports create greater costs in other parts of the social service system and exacts unacceptable human and social costs Employment is central in the UNCRPD; it forms Article 27, which notes that people with disabilities have the right: “to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive, and accessible to persons with disabilities…”, and “to just and favourable condition of work, including equal opportunities, equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances,” and “to exercise their labour and trade union rights on an equal basis with others,” and 11 “to promote opportunities for self employment, entrepreneurship, the development of cooperatives and starting one’s own business,” and “to promote the employment of persons with disabilities in the private sector, through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures.” Furthermore, the UNCRPD also highlights eradicating poverty for people with disabilities, including: “the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions,” and “the right of persons with disabilities to social protection and the enjoyment of that right,” and state signatories must “ensure access by persons with disabilities, in particular women with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes,” and “ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counseling, financial assistance and respite care.” RECOMMENDATIONS: 1. Employment support for all. Every young person with a developmental disability must be engaged, early on, in meaningful and person-centred employment planning and preparation. Employment initiatives must be appropriately and adequately supported to ensure they are sustainable and successful. 2. Real work for real pay. People should have access to real employment working for community employers, doing real jobs with the individualized support needed to be successful over the long term. People with a developmental disability who are employees should receive the standard wage and benefits associated with their position, and never less than minimum wage. Government benefits other than income (e.g. medical, dental, transportation) associated with disability income supports should continue fully through periods of employment when equivalent benefits are not provided by the employer. 3. Support employment at all levels. Educational, financial and personal supports must be available to enable people with developmental disabilities to participate and advance in the workforce. 12 4. End poverty for people with disabilities in BC. We fully endorse the recommendations of the Disability Without Poverty Network white paper submission, of which we are a signatory, including: Income support for people with disabilities in British Columbia should be increased to at least $1200 monthly; Income support for people with disabilities should be indexed to the cost of living; Child support funds should not be clawed back from monthly PWD benefits. 4. Housing and accessibility Home is much more than "where we live". Home is a place where we like to be, a place where we feel comfortable, safe and in control. It is a place where we can create our own personal environment and enjoy family and friends. Our homes root us in community and add to our identity and are the foundation of our work, recreational and social connections. People with developmental disabilities have the same right to a home as everyone else. This includes the right to choose where and with whom to live, the right to own or rent a home and the right to create a personal home environment, where choices, possessions and privacy are respected. The right to housing and choice is embedded throughout the UNCRPD. Article 17, “Living independently and being included in the community,” notes: “States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that…Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement..” and further notes that states must “ensure access by persons with disabilities to public housing programmes.” 13 RECOMMENDATIONS: 1. Choice, not institutions. Individuals with disabilities must be supported to decide where and with whom to live. The opportunity to choose where and with whom to live should not be forfeited due to personal care requirements or arbitrary assessments of capacity. As noted above, this applies equally to the Ministry of Health and health authorities. People with developmental disabilities, or disabilities of any kind, must not be living in institutions like George Pearson Centre. The province has a responsibility to ensure that no new institutions are constructed on that site or elsewhere in the province, and that no new admissions are permitted. In addition, the province must create a plan to close all similar institutions. 2. Affordable housing is a necessity. Affordable housing and a wide range of quality community living options with individualized supports must be developed. 3. Rent subsidies help to end poverty. Access to rent subsidies and rental assistance similar to the SAFER program for people with disabilities in British Columbia promotes housing security and helps to fight poverty. 4. Community investment is needed. Government funding and partnerships with community agencies for housing should be used to build assets that continue to be available to the community and cannot be sold for private gain. 5. Accessibility is for everyone. Broadening the term accessibility to include cognitive accessibility thus encouraging developments in how print and web based materials are created. 5. Social networks Community involvement and the presence of support networks play a key role in the promotion of health, well-being, and community inclusion. They involve families, friends, colleagues, co-workers, and community supports. Families are more often than not the mainstay of caring relationships for their family members, and may require support or respite, not to replace, but to enhance and supplement what they provide to their family member with a disability. Many individuals with developmental disabilities have a disproportionate number of paid staff in their life. This is of particular concern for many people with developmental disabilities who are aging, particularly those for whom their natural support network development was disrupted through years of segregation or institutionalization. 14 The importance of social and personal networks flows from the UNCRPD’s focus on inclusion in all aspects of society, including political, social, and cultural life. It emphasizes: “The importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,” and “Persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them,” something directly supported by the development of personal support networks. Further, the Convention urges a full community life, requiring state signatories to encourage and facilitate social participation, including: “To ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others…including the right and opportunity for persons with disabilities to vote and be elected,” and Encouraging “Participation in non-governmental organizations and associations concerned with the public and political life of the country, and in the activities and administration of political parties;” and “Forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.” RECOMMENDATIONS: 1. Full funding for respite. Supporting families to strengthen their own capacity, and at the same time, to broaden their loved one’s network by ensuring full and adequate funding for respite. The province’s $2800 annual commitment to basic respite is insufficient to meet the needs of many families and often must be apportioned to other services. 2. Support network development. Supporting agencies to examine barriers to friendship and social networks, plan for the development of natural social networks; and to invest in the training of their workforce as it relates to the development and sustainability of support networks across the lifespan. 3. Support inclusive recreation. There is a lack of inclusive recreational opportunities for people with developmental disabilities in our province. Government must foster the creation of truly inclusive, rather than segregated, recreational opportunities as a key means of network development and social participation. 15 6. Asset accumulation through the registered disability savings plan (RDSP) In 2008, Canada began to offer a government-assisted savings plan specifically to provide for the financial security of people with disabilities (RDSP). It was the first country in the world to introduce such financial planning. According to recent Canadian Broadcasting Corporation reports only 11% of the half million Canadians who are eligible for an RDSP have taken advantage of the plan. Many families have also reported bureaucratic issues when establishing a fund for a family member. The creation of the RDSP is in line with the UNCRPD’s mandate that people with disabilities have the right to “adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions,” and requiring state signatories to “take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.” RECOMMENDATIONS: 1. RDSP familiarity is key. Financial institutions ensure their staff is familiar with the application process, individuals with disabilities and families. 2. Application must be easy. Financial institutions, in concert with families and the federal government, streamline the application process. 3. Educate families about benefits. Families and individuals are educated about RDSP and its potential benefits. 4. Plain language and translation is a priority. Plain language materials are created, with versions translated into multiple languages reflecting BC’s diverse population. Conclusion We believe that British Columbia has the potential to live up to, and to exceed, the mandate of the UN Convention on the Rights of Persons with Disabilities. The fact that this consultation is occurring, with a vision of making BC the most progressive jurisdiction in Canada for persons with disabilities, indicates that the province recognizes our responsibility to do exactly that. We are all part of making this happen in our communities. It is time for significant and meaningful action that leads to substantive and long-lasting changes in the lives of people with developmental disabilities, their families, and our communities. In the next five years, we can build a British Columbia that fully recognizes and implements the human rights of all who live here, a British Columbia that lives up to the promise of the UN Convention, and the promise of this consultation. We look forward to working together to make that not simply a vision, but a concrete reality. 16 References This paper makes use of the insights, writings and experiences of current literature on inclusion and people with developmental disabilities in Canada and internationally. Sources consulted in the drafting of this paper include the following: Calgary Region Community Board Persons with Developmental Disabilities. (2012). Supports and services for older adults with developmental disabilities study. Canadian Association for Community Living. (2012). A national report card 2012. Canadian Association for Community Living. (2013). A national report card 2013. Inclusion BC (2013). Annual report 2012-13. Lord, J. and Hutchison, P. (2007). Pathways to inclusion. Concord, ON: Captus Press. Prince, M. (2009). Absent citizens. Toronto, ON: University of Toronto Press. Schalock, R. and Verdugo, M. (2012). A leadership guide for today’s disabilities organizations – overcoming challenges and making change happen. Baltimore, MD: Paul H. Brookes Publishing Co. Schalock, R. (2011). Six critical factors organizations need to think about when providing services and supports to older individuals with developmental disabilities. United Nations Convention on the Rights of People with Disabilities. Westley, F & Antadze, N. (2009). Making a difference: Strategies for Scaling Social Innovation for Greater Impact. The Innovation Journal: The Public Sector Innovation Journal, Vol. 15(2). 17 227 6th Street New Westminster, BC V3L 3A5 | 604-777-9100 | www.inclusionbc.org