Achieving a Carers Mission Statement
"Families need the support to be carers for as long as they wish to be, in the knowledge they have the right to a quality of life care, accommodation and support package for their family member with a disability whenever they choose".
The four components needed are:
"Carer Support" ~ "National Family/Parent/Carer Association"
"Accommodation and Support" ~ "National Disability Insurance"
There are basically two categories of Carer:
1. Those who provide the actual care and support directly, 24/7 Those doing it really tough in a very practical way and,
2. Those who monitor that provided by a service provider, and have their family member with them as often as they can They can be doing it tough where the service provider provides a questionable level and quality of service.
Carer 1: Needs a good and consistent level of quality and reliable in-home and facility based respite, medical, educational and psychological services. Many of these are outlined in the report, "Who Cares".
Carer 2: Needs support to understand the care services. And, encouragement and support to question the service level and quality their family member is receiving.
Accommodation & Support Package:
Carer 1: Needs to know of all the fine detail of all the accommodation and support packages available to them.
Carer 2: Needs to know the alternative options available to them.
National Disability Insurance:
A National Disability Insurance Scheme (NDIS) needs to allow the provision of services and equipment as a right, rather than the present handout. That is to say, rather like Medicare. The NDIS needs to guarantee service and equipment necessary to support the person throughout their life, from the time they are diagnosed with a disability, with that necessary to ensure they receive quality of life care appropriate to their needs.
National Family/Parent/Carer Association:
Given the first three points are controversial in their interpretation and implementation, all carers, parents/families/guardians, will need very good independent of government support to ensure the best outcome for their person with a disability and themselves.
An organisation (Association) able to truly represent its members (those with a disability, parents, families, carers, guardians, friends, etc) against the multitude of people involved in providing funding, services and equipment (governments, bureaucrats, service providers local authorities, etc, etc) requires it to have adequate funding to provide its members with quality legal and professional representation. Its funding and resources must be independent of outside influence, consisting mainly of membership fees and clean donations.
This four stage plan is presented in a very basic form. We encourage you to make constructive comment, suggesting additions and modifications.
However, given the present economic situation (May 2009), government funding to assist the first three points may be somewhat limited for quite some time.
In the meantime, those with a disability, parents, families, carers, guardians and friends, need real coordinated and well resourced support from an organisation well funded by its members to challenge governments, bureaucrats and service providers.
We need to even the playing field, reduce the bureaucratic power over people and ensure people with a disability and their carers have a right to quality of life services and support.