Moving Beyond the Welfare Paradigm PLAN’s Recommendations for the MSDSI Disability White Paper Community Consultation Introduction: In 1986 British Columbia became a Canadian leader by closing its institutions for individuals with a disability. This progressive move initiated a significant shift in how a caring community supports its disabled citizens. The responsibility of care shifted from the ‘institutional level’ to the ‘family and community level’. In spite of our best intentions however, the full expression of this shift has not been realized. While individuals with a disability are now living in the community, many are not yet a part of the community. Institutional barriers and a welfare paradigm continue to limit the ability of individuals with a disability from experiencing the full benefits and responsibilities of community living. PLAN’s Contribution Planned Lifetime Advocacy Networks Society began in 1989 with a group of elderly families asking themselves the question: “Who will take care of my son or my daughter after I’m gone?” These families recognized that the shift from ‘institutional care’ to ‘community care’ placed a significant responsibility upon families to facilitate relationships, monitor quality of life, and advocate for their children. Eventually PLAN’s families realized that a better question to guide their efforts was: “What is a good life?” Over the last twenty-five years PLAN has become an internationally recognized organization that has provided social innovations and a successful network-building model. PLAN pioneered two significant innovations – the Registered Disability Savings Plan, and the Representation Agreement, as well as facilitated the development of ‘Tyze’, an online, network building tool. PLAN’s ideas have been replicated in communities around the world. PLAN understands that social innovation requires adopting a new mindset; a new framework; and a new paradigm. We recognize that a progressive and caring society needs to focus on what people can do rather than only what they cannot do. Acknowledge their assets rather than just their needs. And that the role of programs and services is to support the inter-dependence of individuals, not supplant their inter-dependence and foster continued dependence. This new mindset will lead to new legislation, new policies and procedures, and new funding methodologies. PLAN recommends: 1. Take our sons and daughters out of the welfare system Welfare is intended to be a system of last resort. It is accessed when all other efforts to create financial security have failed or been exhausted. Additionally it is meant to be a temporary support. As a result of its temporary nature, a high level of accountability is in place to review welfare recipients for continued compliance with funding criteria. Our children with a disability, however, do not have a temporary condition. What is needed is not a system of last resort, but a thoughtful framework that supports a life of dignity, contribution, choice, relationships, and quality living. Furthermore, if disability benefits become open to be built upon, the increased efficiencies will result in cost savings for the government. 2. We want to build assets The current system fails to consider the potential for the community to contribute to the well being of an individual with a disability and share in the responsibility of caring for our most vulnerable citizens. Because gifts are deducted dollar for dollar from future disability assistance, families and friends are discouraged from contributing towards their loved one with a disability. Many families view this as a 100% marginal tax rate on some of the most vulnerable and disadvantaged people in society. Similar rules dissuade people with a disability from pursuing employment or saving to invest in their own futures. Receiving disability benefits should not limit anyone from achieving his or her highest potential. Rather the disability benefits framework ought to provide a secure foundation upon which one’s highest potential can be realized. 3. We want the option of individualized funding to be readily accessible to all Providing disability supports under an individualized funding model would change the relationship between service providers and individuals with disabilities. Currently, many disability service agencies are more focused on the government-agency contractual relationship than on the clients and families they serve. When individuals and their families are responsible for securing service contracts and monitoring the disbursement of funds this fosters more effective and efficient services. Social agencies become more like enterprises—social enterprises—held accountable by their customers’ satisfaction. Services support a “good life”, not supplant it, are tailor-made for the individuals receiving services, and are transitional to other regions. And the public cost of disability supports decrease as efficiencies and effectiveness increased. Individualized funding needs to be an option any family can easily access. 4. Give people the option to use their government funds to develop networks After 25 years of experience in creating networks of support, PLAN has discovered the power of relationships to transform the lives of people with disabilities. A caring community is essential to both quality of life today and security tomorrow. A strong personal network has proven to create greater independence, self-worth, sense of belonging, accountability, crisis management and overall quality of life. PLAN has a model that works. Permitting the use of individualized funding to pay for developing and maintaining networks of support would make networks available for every person with a disability. Additional Recommendations: 1. Develop a Provincial Family Advisory Committee on Disabilities This advisory committee would be made up of family members representing a diverse sector of individuals who have a disability. The role of the committee would be to interact with appropriate agencies at a provincial level regarding key topics such as assets, education, employment, social networks, personal supports and housing, and would work towards solutions that meet the needs and interests of those they represent. 2. Create a Centre of Excellence A new type of expertise is needed to assist families who have a child with a disability to secure their future. A Center for Excellence supported with “future proofing experts” would provide the guidance and support needed to secure the future in areas such as: RDSPs, Representation Agreements, home ownership or rental options, managing individualized funding, wills and estate planning, trusts, navigating government benefits, and linking everything together so all work in concert. 3. Develop a system where every service provider in BC will ensure their clients are registered for an RDSP The RDSP is an important financial resource to secure the future for individuals with a disability. Every eligible BC citizen ought to be registered for the RDSP. Make BC a leader for the maximum uptake of the RDSP in Canada. 4. Remove Restrictions on Trusts Restrictions on trusts limit the capacity of individuals with a disability to secure their future. Because trust money was originally earned, saved and provided by the family for the Trust—perhaps because the person does not qualify for an RDSP, or to provide more accountability amongst family members—money paid out of a Trust should be allowed to benefit the person in whatever way the Trustees deem appropriate. Just like the RDSP. 5. Ensure all BC agencies recognize and accept the Representation Agreement The Representation Agreement (RA) is a powerful tool created by the BC government to honour the capacity of a network of support to assist with decision-making and honour choice. The Representation Agreement is an important tool that BC should be proud of. All organizations and government ministries ought to recognize and honour the Representation Agreement. 6. Convert housing assets owned by CLBC to personal ownership. More needs to be done to encourage home ownership amongst people with a disability. One option is to move housing stocks into the hands of individuals rather than organizations. Final Thoughts: We believe moving disability benefits out of the welfare system would be simpler for government to administer, as it would do away with onerous monthly income reporting requirements. This would free up frontline workers to support a life of dignity, contribution, choice, relationships, and quality living. An ‘asset based approach’, one where clawbacks do not exist, would encourage saving and the accumulation of assets and act as a financial buffer to create financial security. It would encourage greater financial literacy amongst people with disabilities, and recognize and encourage financial gifts of support from family and friends. If families were given the option to purchase the services they require, such as network creation and maintenance, financial planning, and home ownership, the market would respond appropriately, providing greater efficiency and effectiveness. Thank you for conducting this community consultation and for setting goals to increase the inclusion and independence of people with disabilities across British Columbia. We appreciate the time you have taken to hear our thoughts on these important matters. Sincerely, PLAN