This new site is designed to link thousands of people with cerebral palsy and their families throughout NSW who access, need and - in the absence of direct client funding - currently have little choice but to rely upon the services and supports that disability service providers, both government and non-government, choose to provide.
Its creation follows a public meeting in Sydney in October 2011 organised by a group of clients and families seeking franker, more open dialogue and information-sharing from one of NSW's biggest non-government disability service providers, the Cerebral Palsy Alliance (formerly known as The Spastic Centre of NSW), about the quality and nature of its current services, as well as future service delivery plans.
The impetus for the public meeting arose from the organisers' deep conviction that people with disabilities and their families are fundamentally entitled to detailed, factual information about all services delivered in their name, and on their behalf, by salaried professionals.
We believe that disability service providers are - or should be - answerable to people with disabilities and families as to how and on what they spend taxpayers' funds and all public donations sought in the name of people of disabilities and their families; our names.
We believe, for instance, that data on waiting lists for vital disability services and supports should be routinely published so everyone knows the real, actual picture.
We contend, for instance, that it is cruel to lead people with disabilities like cerebral palsy and their families to believe that a vital service or support is, or will be, readily available when needed - only for people to discover when they request that vital service or support that there is a one, two or three-year waiting list, or that it is not available at all.
The Cerebral Palsy Clients and Family Forum seeks to promote honesty, openness and greater accountability. We know and acknowledge that disability service providers are trying to do a very difficult job in a dysfunctional, underfunded and severely rationed disability care and support system. But we believe that openness and honesty are always preferable to PR spin and secrecy, and we hope this site will provide a useful and constructive new forum for people with cerebral palsy and their families to share information amongst themselves, and to communicate their thoughts, views and experiences to service providers in NSW.