Mrs VALE (4:59 PM) —I want to use this opportunity today to raise a matter that is of great importance to a number of my constituents, and this is the urgent unmet need for appropriate disability services, including respite care and accommodation  for those in our communities who have a family member with special needs. The issue of support for families with disabled children and adults has been brought up many times and in a number of different forms before this House, but it is still of great concern to me and to many of my constituents that not nearly enough is being done. The long indifference of the New South Wales state government is causing great distress to the carers in my electorate, the vast majority of whom are exhausted women, many of whom are doing this as a labour of love, alone and unassisted.

I have recently received a number of distressing requests for assistance from several of my constituents who, after receiving little or no support from the New South Wales state government on this issue, have indeed felt alone and abandoned. However, I do not want to stand here and trash the New South Wales state government in the 10 minutes available to me, because I believe that more can and should be done at a national level to support and alleviate the distress of carers of disabled people. They deserve more than our mute respect and regard. They deserve action and positive commitment from both governments if their situation is to be relieved and supported.

I want to bring to the attention of this House the plight of one such carer—a mother in my electorate—that touched me deeply as well as many others in my local area. Her distress motivated me to speak on this issue in the grievance debate today. Susan Filacouridis is a loving mother of an intellectually disabled 18-year-old teenager. She was forced to abandon her son to ensure that he was able to receive the care and accommodation that he so desperately needed. After years of unsuccessful trials of different medications and behaviour modification plans, the breakdown of her marriage and living in social isolation, Ms Filacouridis believed that she had no other choice. Ms Filacouridis has endured tremendous hardship over the last 18 years. Last month, literally bending at the knees, she reached the end of her endurance. When police removed her son from his workplace for disruptive behaviour, Ms Filacouridis refused to pick up her son from the police station. Even when they threatened to put him in a detention centre, she was unable to collect him because alone she could no longer provide the services and appropriate care that he desperately needed.

In April this year, Ms Filacouridis sat in the visitors gallery in the New South Wales state parliament when the opposition leader, John Brogden, asked the Premier, Bob Carr, to respond to her plight. What did the Premier do? He simply accused the opposition of hypocrisy. Ms Filacouridis later said that Mr Carr had failed to answer the question and had trivialised her situation. She subsequently wrote to the Premier, claiming he had:

Unfortunately, this mother’s tragic story does not end there. After Ms Filacouridis was forced into the decision of abandoning her severely disabled son at the police station, accommodation and care of another family in the same situation then had to be cancelled. The New South Wales state government has confirmed that accommodation is so limited that the only way a place in a group home could be found for Ms Filacouridis’s son was at the expense of another struggling family—usually another struggling lone woman, herself bending at the knees under the weight of such unrelenting responsibility, trying to sustain the unsustainable, living 24/7 the grinding effort required of the carer of those with disabilities, doing the job of government and saving the community millions of dollars by her selfless devotion and continued personal commitment to her family.

The public must be made aware of the domino effect caused by the disgraceful lack of available beds for emergency care. There is so much need in the community for appropriate respite care and accommodation. These struggling Australian families are in our neighbourhood—they are our neighbours, and they cannot continue to do it on their own anymore. As a matter of fact, the more they do, the more they seem to be expected to do by the state government. They even seem to be penalised for their efforts. Is it government policy to only respond to these families when they reach breaking point? It is cold comfort to be continually told that your child’s name is on some unseen waiting list.

In a country as wealthy as ours, we can afford to care for our less advantaged and care for them appropriately. We should be able to provide quality respite service for families not only in crisis but also on a more regular basis so that they are not pushed to the extreme of their endurance—and then to find that their new found support is only at the expense of a family in a similar stressful situation.

There is a respite care centre in my local area known as Margaret House. It operates from Friday at 5 pm, over the weekend, until Monday at 10 am. Six children are accommodated in respite care over the weekend on a rotation of eight different groups. That means that one of my local families can hope for one weekend of respite every two months. Regrettably, I am informed that Margaret House has over 100 disabled children on the waiting list. Once upon a time Margaret House was able to provide respite care for adults, until the state government cut the funding. So not only are there 100 families with disabled children in my local community but also there are an unknown number of families with adults without respite care. Further, I was concerned to learn recently that a carer at Margaret House had worked 38 hours over one weekend because there was no funding available for additional staff. Had he been unable to work, the children would have had to be sent home. He was well aware of the distress that this would have caused the mothers. It is more than time for action.

It is time that we reviewed the system and how we accommodate and support those with disabilities. I am not advocating a return to the pre Richmond report days, but it is time for a review of how the Richmond report is being implemented. The Richmond report was welcomed as a breath of fresh air in 1983. It opened the doors of institutions across the state and encouraged those with disabilities not only to be cared for by their local community but also to take their rightful place as members of that community and not be locked out of sight in an institution. In principle, this was a responsible and appropriate new policy. The key recommendations included:

The two primary objectives were:

While many aspects of the Richmond report have been implemented, regrettably the level of funds allocated to resource those ‘services that are to be delivered by a system of integrated community-based networks’ have not been nearly sufficient to meet the actual need—nor has the objective of funding to provide services which maintain clients in their normal community environment been achieved. They were worthy objectives, but they have not been delivered.

As a matter of fact, the only change felt by those families with disabled members is that greater weight has been placed upon the mothers, who, more often than not, find themselves alone and exhausted with the full load of unrelenting care for their disabled children. What would happen if parents across the state—or across Australia for that matter—did what Mrs Filacouridis was driven to do? Is leaving their beloved disabled child at the local police station or indeed, at the Premier’s office, the only recourse for the desperate and exhausted? Is that what they have to do to receive recognition and appropriate support services for themselves and their children?

It is encouraging to see that, according to the budget papers, the Department of Ageing, Disability and Home Care received an increase of $163.6 million in the New South Wales budget last week. This is the main agency responsible for delivering programs and policies that assist older people and people with disabilities and their carers. How this money will be spent will be of great interest to the carers in my community. I will join them in watching how it is directed to the important areas of need in respite and accommodation. Another of my constituents wrote to me and summed it up well:

It is time for all of us to stand and deliver.