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2. Process (system design & monitoring)
Firstly, the design of a new transformed system for supporting people with developmental disabilities in Ontario must be founded on the formal lead and participation of the primary stakeholders, the people themselves and their families, because they are directly affected by the system, and because they have the most extensive personal experience and knowledge. Service providers are secondary stakeholders whose mandate is to respond to the requirements of primary stakeholders.
Secondly, because no such system design will ever be perfect, and because every system needs to be monitored and continually improved on an on-going basis, there is a requirement for on-going participation of people with disabilities and their families in planning, reviewing and improving the system at regional as well as provincial levels.
The involvement of people with disabilities and their families in supports that profoundly affect their lives is a simple consequence of the recognition of people as respected citizens rather than merely as clients of services.
Key issues
- People with disabilities and their families should be recognized as lead resources in driving policy. They should be recognized as the primary stakeholders at regional and provincial policy tables.
- The service system must be made accountable to individuals and their families through individualized funding that ties funding to people rather than to agencies.
- There need to be effective processes to make agencies and government respond to complaints about supports and services.
- There needs to be effective independent appeal mechanisms for individuals unhappy with the decisions of bureaucracies and agencies
- There is a need for independent consumer satisfaction surveys
- There is a need for an Adult Advocacy Office to protect the rights of vulnerable adults.
- The Ministry of Community and Social Services needs to be accountable to people with disabilities and their families, and to the public through regular (e.g. annual) open reporting of funding statistics, of how well it has met performance criteria, of consumer satisfaction surveys, etc.
- The government should fund demographic research to budget disability support funding on the basis of population statistics and needs.
- Independent, unencumbered (i.e. independent of service providers) planning and brokering should be funded (at arm’s length).
- The developmental support system should be based on self-directed planning for all. It should allow people to design their own support system
- Advocacy groups should be funded (at arms length) to safeguard the rights of vulnerable citizens
- Service system must be fully accountable to person and family
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