Sunday, July 25, 2010

New Political Party for carers and family members

The Parents Families and Carers Party, which represents voiceless parents, families and carers of Australia, is political party that needs our support.

The party exists to politically represent family members and carers who care for people with disabilities, people with mental health problems, older people and other Australians who rely on family care.
The Party has run candidates in previous State and Federal elections.

The Party argues that despite their rhetoric, the main political parties have abandoned parents, carers and families to the market and/or to service providers who are driven largely by provider self interest. They are absolutely correct in that.

The party has a well argued analysis of the problems and a radical agenda for change. This is from its website:

"For more than a century, political parties of both Right and Left have presided over a steady shift in power away from individual citizens towards large corporate and state institutions. In the process, both Left and Right have become defenders of these powerful corporate, institutional and provider interests at the expense of relatively powerless individuals and families.

In government, Left and Right have administered legislative and regulatory regimes that favour large corporations over small business; provider interests over consumers; professionalised and incorporated entities over informal civil society arrangements; state accreditation and licencing authority over voluntary and localised initiative; funded quangos over independent self-funding governance; and impersonal litigation-prone rules and regulations over personal and communal responsibility. As the initiators, enactors and administrators of these regimes, the two major political machines (Labor and Liberal) have become instruments through which powerful corporate, institutional and provider interests uphold and preserve their dominance over society".

You can read all about the Party here at its website. Membership of the Party is free and details for joining here.

The article below is by one of the Party's Queensland candidates.
Political Change in Disability and Health by Pam Maram Queensland National Council Member, Parents Families and Carers Party

I have two teenage sons who rely on the full support of close family to lead as ordinary a life as possible. I have two daughters without disabilities (a lawyer and a social worker) and two sons with disabilities (unemployed and uneducated).

The experience of disability has meant I had to stop working to care at home and have lived on the poverty line for over 5 years. This existence has exhausted all financial resources, and the saddest thing is that my children with a disability have passed through their school years with virtually no education, since there have been no appropriate school options available since day one. My boys will therefore start in the job market with two strikes against them. 1. Poor literacy etc... and 2. the abysmal statistics for employment for people with a disability. A legacy of poverty has been created through no fault of mine as a parent and through no fault of the children who want to try and have not been given adequate support.

I am weary of the fight from the bottom up. Changes need to come through the political process, with the law followed by legislation. De-institutionalisation was important and I would not have had it any other way. But a gap was created as the need for support at home was ignored. This has now grown into a housing crisis with the prisons filling up with people with disabilities. This state of affairs must not continue for another minute.

Our experience to date is that so many of the federal dollars spent on disability are wasted. Much of this money is being spent referring us away from support and building an impenetrable and layered bureaucracy that has left my family on the brink for years. Of late the only program that offers funding for my children with a disability has forced us into the position of begging and explaining and re-explaining their needs - which have not changed in years - to access the funding that is their entitlement. I feel they are wasting the precious resources available but they act like we are the ones wasting the money. Those resources can either make or break this family and to have to beg and be spoken down to is a burden, day in and day out. There is no system, no standards, no empathy and no understanding that being in control of the resources means being in control of the decisions, that, but for the disability, a normal family would make as a family.

There must be a political force to create the change necessary for people with disabilities to be included and to be supported as required by the law and to lead an ordinary life with choice, an education, health care and a place to live free from abuse and neglect.

I do know that without the voice of this Party to direct policy, the decisions made by governments will continue to be made in ignorance. So much money is being spent on the bureaucracy (which is always too hamstrung to make the changes its funding was set aside for) and this is not the intent of it nor does this spending comply with the laws that the money is meant to implement and support.

More money is not the answer, the answer is in how the money is spent and by whom. Speaking as a mum, the journey for people with a disability has been a journey of discrimination, labelling, blaming, a lack of service and a lack of empathy and understanding. But for the children without a disability I would have had no reference point to refer to and I am glad of it, both the experience of raising children with and without a disability. My fear now as my sons grow up is that they have been given a pension and sidelined...but for me.

I am determined not to let resources go to the providers which for us has literally meant no service at all alongside no accountability for the lack of service and more referrals to more no service agencies and at my sons' ages we are talking about dental, mental, health, school and so on...These were a non-issue for my two children without a disability.

Why? Because my sons have a disability and discrimination against them is a daily occurrence even though it is now against the law and yes I am willing to fight to change this.

I urge every other parent and relative and friend in disability and mental health to join this Party and contribute in building up our collective strength. On my own, I am just a solo mum living with two children with a disability. But all of us together, then we can't be ignored.

1 comment:

Corinium live in Carers said...

It's interesting to see another countries struggle with caring needs, and it's not just the UK.

Thanks for the fact filled post.