Individual Submission – Jean Tops
I am a carer
I am the Mother of a 47 year old Deaf/Blind daughter, the result of Rubella virus.
I have also raised two sons with Phenylketonuria, both older than their sister.
I am the founder and President of the GCA. I have read through the discussion paper briefly because I found the information just a few days ago.
My greatest concerns over and above the plan general content is to say that in more than 50 years of caring I have witnessed the systemic failure of “Top Down” Federal/state based groups that have claimed to represent all caring families, but do not! That they are city centric, empire- building and lack real effort to canvas the views of caring families across the regional, rural and remote areas of our nation.
GCA was formed in 1997 as a direct call from region-based carer families for a local support service and a voice for regional carer input to services and planning.
More than a decade ago we developed a Plan for Regional Carer Networks that were managed by Carers for Carers and presented that plan to consecutive state and Federal Governments to no avail. The critical factors of ‘grass Roots’ support, peer Advocacy and a fair deal for unpaid carers are clearly articulated in the Document that was presented to the then Minister for the NDIS and Carers MP who promised to consider our Plan carefully. Just another broken carer promise! The current Victorian state Minister (in response to our request for help) told is in a letter to go seek some respite!!!So, they don’t care either!!
Funnily enough, the current plan by DSS is (as I read it) a ‘Top Down’ version of our ‘Grass Roots” Model in many respects. The missing components are the absence of any real unpaid caring family input from the ground up to ensure that support and advocacy is available to all unpaid carers regardless of who is being cared for. The emphasis on the views of ‘so called ‘professionals’ which can only be described as self serving for the so-called Professional Planners and experts.
Our limited regional Carer Network is self funded with the support of Philanthropy.
Our direct service is delivered by a Carer Mentor to the family home if necessary.
The key components of the Job Description (after trial and error and a number of so-called professionals failed) includes that the Mentor must have unpaid caring experience, empathy and the ability to advocate for the supports carers need to continue caring before other skills are counted.
Mentors are also critical in establishing and maintaining local carer support groups which often times fail when busy and stressed carers are expected to do the planning for these.
Carers are fed up with the so called paid professionals who (a) talk down their need for help (b) tell them what to think or do (c) accuse them of ‘double dipping” on services (D) charge ‘outrageous admin fees’ on the scraps of support offered.
Disability Advocacy has long been funded and provided at the regional level, this is clearly discriminatory for the families caring for the bulk of the most dependent people with disabilities. Most often when family asked for advocacy for their kin they are told ‘we don’t advocate for families!
Funded Regional Advocacy is not present for the elderly or mentally ill in similar measure regionally to that for the self advocacy sector.
We have remained successful in our region for almost two decades because we are carers and former carers managing a support service for carers. We have lived their experiences often for a life time.
Philanthropy does not fund administration costs so it is a yearly battle to raise the funds for rent for our Carers Place and for administration. We have succeeded because caring families and members of the public believe in us and what we have achieved..
I am attaching a copy of our ‘Regional Network Plan because I hope you will read it and hear the voices of carers themselves who give $60 billion yearly to the national economy. Unpaid carers remain vital to the success of the NDIS, Aged Care and Mental Health services. You stand to lose large chunks of that unpaid family caring if you continue to fail the grass roots of caring.
Please Listen to us.