Carmen Lawrence (Fremantle, Australian Labor Party) Share this | Link to this | Hansard source

Today I want to draw attention to the needs of people with disabilities, particularly those with a developmental disability, and their families and carers. My observations suggest that these groups, people with a disability and their carers, are not benefiting as they should from our prosperity. There is a growing unmet need for services. It is now possible to reduce this unmet need, but left much longer it will become insurmountable and then will become an excuse for inaction.

Such unmet need undermines the dignity and quality of life for a great many Australians. They are an often forgotten group, and many endure enormous strain silently and without complaint. To draw attention to this unmet need and to tell the stories of people with disabilities, I suggested to my parliamentary colleagues that we form a cross-party friendship group, the Parliamentary Friends of People with Disabilities, and it has been formed, I am pleased to say. It is particularly important because between now and mid-2007 the new CSTDA—that is, the Commonwealth State/Territory Disability Agreement—will be negotiated. Unfortunately, previous agreements have been the cause of acrimonious division, buck passing and blame shifting. I believe that collectively we owe people with a disability a far better result than this.

The parliamentary friendship group has over 50 members and senators signed up. The co-convenors are Senator Rachel Siewert; Mr Kym Richardson, the member for Kingston; and me. We are very pleased that, without being invited, the Prime Minister and the Leader of the Opposition requested that they be co-patrons. We will make sure that as co-patrons they hear the stories of people with disabilities and their families.

The group endorsed the broad aim of raising awareness and support for people with disabilities, their families and carers, but we need to do more than that. To put us in the picture, a few statistics are in order. The ABS estimates there are about 687,700 Australians below 65 with a profound or severe core limitation on some of their functioning—mobility, intellectual functioning and sensory functioning. About one in 10 Australians provide care and support for a person with a disability. ABS surveys have shown that nearly 40 per cent of primary carers spend at least 40 hours a week meeting their caring responsibilities—more than the average working week. It is important to note that a significant proportion of these people are over 65, a time when most of us can imagine retiring.

The Developmental Disability Council of Western Australia, an admirable and very active group, surveyed people in Western Australia who are caring for people with a disability and found that more than half the respondents care for a person needing constant care—24 hours, seven days a week. I believe it is important in this parliament that we restate the principle that we all have a responsibility to ensure people who have a disability are provided with the help they need, when they need it. It is not just up to their families.

The members of the parliamentary friendship group and I share the vision of advocates in the sector that we need to develop and implement policies which eliminate the need for people to beg to have their basic needs met. They should not have to do that. In my view, how we respond to people who cannot by themselves fully meet their own needs and how well we embrace the core values of equal value, human worth and dignity of all people is a measure of our decency as a society. Conversely, when we fail to meet their needs, we are clearly demonstrating our lack of decency.

We all understand that families will always do their utmost out of love and a sense of responsibility for people with a disability, but they simply cannot and should not be asked to provide all the care. In any case, it is not possible. They cannot provide, for instance, for the specialist services in health, education and transport or for the social needs of all their family members. People with a disability should be able to enjoy the company of others as well. They should be able to integrate into the community and to take part in meaningful employment. These are not things that families and carers can provide. Nor can they provide the facilities that allow access to employment and those normal social experiences that I have talked about.

Importantly, they also need decent respite—not just an hour or two here and there. They need time to lead their own lives, to develop their own relationships and to parent their other children. In my view, the system at the moment is out of balance. It is weighted too heavily on individual and family responsibility and not enough on the rest of us—the community and governments. We are not providing our share. The cost of this imbalance is taking its toll. Anyone who spends time with people with a disability and their families will know that there is a great deal of pressure placed on the individuals with the disability as well as their family.

There is a cost to those with a disability who are denied the possibility of reaching their full potential and taking part in community life. These are very important objectives for every human being. It is taking its toll too on the families and carers who are struggling to meet the needs of their loved ones. They feel their inadequacy—or at least that is the way they often describe it to themselves, when in reality they are being asked to do the impossible.

I listened a couple of weeks ago as a woman in her 40s, perhaps—one of my constituents—with an early adult son who needed a great deal of care, described in some detail what her daily life was like. I would not want to live that life. She was stressed and overwhelmed and she was asking for care. She should not, however, have to beg for that care. What she demonstrated to me is that sometimes the needs of a single family member, with all the love in the world, can actually dominate all aspects of normal family life. She did not have a life of her own to speak of.

I commend to the House the report of the Developmental Disability Council of Western Australia, which we have circulated to a few members, called When needs go begging. It gives an outline not only of the lives of people with a disability in Western Australia—it could be anywhere—but also of their families. There is a story in here which is typical, and I have a little time to read it into the Hansard. It is about Michael Tilbrook. In some ways Michael is typical of a person with a disability who is being cared for by his family, with some support from government services. Michael is 14 years old. He has a condition which results in the progressive deterioration of his physical abilities. His parents say that the biggest pressure for them is the loss of their freedom and lifestyle. They say that their social life is next to zero and a simple weekend away can take months to arrange. Most of the rest of us take something like that for granted.

Also, Michael does not go out as much as he could if they had help, and holidays are especially long and lonely for him. The lack of services means that Michael suffers as well. Since Michael was diagnosed at the age of four, his life has been gradually more affected as his condition has developed—from a young boy who could walk, talk and play to a young teenager who can hardly talk, cannot move without his wheelchair and has lost most of his self-reliance for the most basic needs. Of course, some children are born with disabilities of that kind. The parents say that it has been heartbreaking to watch his gradual decline, and it is not finished yet. They say, ‘God only knows how much more he may lose and the future is a big question mark.’ They go on to talk about their lives.

There are many such stories in here, including of elderly people trying to provide care for their now middle-aged children with intellectual disabilities and sometimes with multiple disabilities, which means 24 hours a day, seven days a week care is what is required. They are people who are suffering at the moment from the failure of governments at both state and federal levels to provide adequate respite and accommodation to allow them to plan for the future.

I know the members of the parliamentary friendship group join me in urging the state, territory and Commonwealth governments to properly negotiate the new CSTDA. It is an important agreement because it talks about the responsibilities that various levels of government should undertake. The first agreement was signed in 1991. It was intended to provide a national framework so there was not duplication and so there was streamlining of the administration of specialist disability services. It made some very important steps forward. Unfortunately, as I said, the last one seems to have been beset by vitriol and a lot of debate about who was responsible for what, rather than accepting that collectively we all have to ensure a better outcome. So we need another CSTDA, but this time those shortcomings that have been identified must be overcome. There must be a genuine commitment from the Commonwealth, state and territory governments to people with disabilities and their families to not fight with one another. There must be an approach to disability that is about people, not politics, and a commitment from the various governments to work in partnership with one another rather than sparring all the time. In particular, there must be a commitment to resolving unmet needs for support services and a proper plan to accomplish this so that people with disabilities and their families can lead dignified and full lives.