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By Brian Salisbury
Those living without a label take personal decision-making for granted, yet the right to self-determination has been denied to individuals with disabilities and their families by services that lack accountability and flexibility, and which ultimately reduce people’s citizenship status. The reasons are complex, but even a cursory analysis reveals a disability system that is predicated on two key, yet outdated, mechanisms: block funding and case management. New approaches must honor self-determination and accommodate people’s aspirations. Individualized funding (IF) and independent planning (IP) have major roles in this transformation: both promise people with disabilities and their allies control over their lives.
IF refers to public money allocated to individuals, or in the case of children to their parents, to meet disability-related needs. With IF, the person or family determines how funds are spent, within agreed parameters. However, informed decision-making requires more than economic power. This is where IP fits: information, advice and technical assistance provided to those requesting support to identify different ways to meet personal needs. With IP, practitioners cross various boundaries to assist people to achieve their vision of a good life. IP began in 1976 when a British Columbia parent group conceptualized the service broker as a professional, independent from funders and providers, who could assist their family members to return to the community from an institution. Where are we, 27 years later? Simply put, conflict-free planning led by individuals and families exists on the periphery. IP certainly hasn’t supplanted case management, and is unlikely to. While case managers continue to reinvent themselves, they remain agents of the state. Inevitably, when an innovative idea emerges, people try to understand it in terms familiar to them; the result is that the essence is lost, and the idea becomes downgraded to a new variation on an old theme. So, we are left in a quandary. How, in a complex environment with competing agendas, do we move IP beyond its “boutique” status and embed it as a new system element? This article outlines what British Columbia advocates are now doing to achieve that outcome.
British Columbia was the first Canadian province to close its institutions and has a history of service innovation. Yet, the current system, governed by the Ministry of Children and Family Development, has fallen short of meeting individuals’ and families’ expectations. The system is characterized by both government and community as reactive and financially unsustainable. In a unique partnership, a community coalition has been working with government planning the creation of a new community governance body to be known as Community Living British Columbia (CLBC). CLBC will be created by the Community Living Authority Act and will assume responsibility for all services and supports provided to adults with developmental disabilities, and children with special needs and their families in late 2004.
CLBC, which will be committed to the people it serves having the opportunities and supports needed to pursue their goals and participate as full citizens, will have three primary roles:
A key element of change is Independent Planning Support (IPS), which CLBC will define as the provision of information, advice, and procedural assistance to eligible individuals and families, independent from service providers and service funding decisions, to assist them in developing and implementing their personal support plans.
To achieve its vision, CLBC will have two separate divisions, each headed by a vice-president: Community Operations, and Planning and Community Development. Community Operations, located centrally, will be responsible for system functions like eligibility determination, resource allocation, contract management, and outcome reporting. Planning and Community Development, operationalized through staff known as Community Living Facilitators, will provide IPS and engage in community development activities.
CLBC will be governed by a nine-member “Carver style” board which will include self-advocates and family members. The draft legislation specifies CLBC “must” provide both IF and IPS. The bifurcated organizational structure is an attempt to “firewall” IPS from operational decisions involving eligibility and funding. These gate-keeping functions have historically hindered the provision of community-level planning support needed by individuals and families. In designing CLBC, advocates had to accommodate government’s position that it wouldn’t support creating two separate legal entities, one of which would provide planning.
British Columbia is moving from five macro regions to the concept of 17 community areas, and from 51 offices in 40 communities to staff who are resident in 55 communities. Facilitators will work out of, or be affiliated with, one of 17 Community Living Centres which will also serve as meeting places for individuals and families to share ideas and access information. Facilitators will be mobile, using advanced technology to stay connected.
Although facilitators will be operationally independent from CLBC decision-making processes, they won’t be fully independent. However, various safeguards have been created. A Community Living Planning Commission will act as a “watchdog” to ensure CLBC delivers IPS to the community’s satisfaction. A charter will set out facilitators’ roles and responsibilities and the job description will outline facilitator accountability to individuals and families. People don’t have to use IPS; they can access planning support from those with whom they have trusted relationships.
Other changes are also occurring. A flexible individual and family support policy will establish parameters around how the system responds to individuals’ and families’ needs. Contracts will require agencies to report on personal and system level “outcomes,” rather than “inputs.” Communities will determine their own crisis response approaches, and there will be an array of safeguards, both multiple and redundant, formal and informal.
British Columbia’s community governance model blends vision and pragmatism and illustrates how a community-led transformation process can redress the resistance and inertia which characterize bureaucratic human service systems. The model invests considerable resources in the facilitator role in the hope this will contribute to greater system- level innovation and creativity, and better individual and family outcomes. It isn’t a perfect system, but the risks are worth it. British Columbia’s system change initiative remains a bold attempt by community and government to create a foundation upon which people can begin to reclaim their citizenship rights.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu). Citation: Gaylord, V., Moseley, C., Lakin, C. & Hewitt, A. (Eds.) (2004). Impact: Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities 17(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available from http://ici.umn.edu/products/impact/171.
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