Rachel Siewert (WA, Australian Greens) Share this | Hansard source

The Australian Greens believe that the carers of Australia need and deserve much more support than they are currently getting, and we are pleased to see the introduction of this legislation. Carers provide more than care to their loved ones. They also support our community in a vital way that is irreplaceable. When you consider that the Access Economics report that was produced a number of years ago estimated the cost of care at about $30 billion a year, you can see the level of support that carers provide to our community. They provide quality of life for those living with a disability, for the sick and for the elderly. They provide quality of life and improved outcomes for people far beyond any monetary value. But that care comes at a personal cost. I am sure every member of the Senate, and, in fact, every member of parliament, has at some time worked with carers.

The Greens support the intent of the Social Security Legislation Amendment (Improved Support for Carers) Bill 2009 and the Social Security Legislation Amendment (Improved Support for Carers) (Consequential and Transitional) Bill 2009. However, we do remain concerned that there are a number of issues that came up during the Senate committee inquiry that have not been addressed, and I will be talking about them shortly. We are putting forward what we believe are sensible and practical amendments to the bills that address the shortcomings that were raised during the inquiry. We believe these will enable the legislation to achieve better outcomes. In fact, they will enable it to achieve its intent, which, as the name of the bills suggests, is improved support for carers. I note that all these concerns were acknowledged and discussed in the report by the Senate Standing Committee on Community Affairs. There was strong consensus amongst the carers, advocates and experts we took evidence from. They welcomed and supported the intent of this legislation but also called for a number of the problems to be addressed. These include, for example, issues that were raised about the child disability care load assessment tool, episodic care, exchange care and hospitalisation.

I would like to talk, firstly, about the disability care load assessment tool for children. I note a quote that I thought expressed rather well the thoughts of a lot of people who gave evidence to the committee. It said that the care load ‘should be conceptualised as broader than physical or personal care’ because it entails ‘constant vigilance, supervision, encouragement, nurturing, and the ensuring of medication compliance’. The Greens were concerned that when the care load assessment tool was first put out the government did not consult carers and peak organisations in the development of the tool. A draft of the proposed disability care load assessment tool for children was not available to stakeholders prior to the inquiry. In fact, some of the witnesses who appeared before the inquiry had not yet seen the tool. That meant that, unfortunately, there was not sufficient opportunity for carers and experts to assess the proposed tool and provide detailed input to the committee inquiry. The Department of Families, Housing, Community Services and Indigenous Affairs, FaHCSIA, told the committee that it considered the introduction of this tool to be ‘the most significant reform’ involved in the bill. While the development process was based on a questionnaire involving 1,200 carers, paediatric specialists and allied health professionals, there was no opportunity given to those carers and experts to consider and provide feedback on the actual assessment tool. Given the importance of this issue and the significant role of the assessment tool and these reforms, we do not consider that that was good enough. We believe that there needs to be a robust process to ensure that we get the details of the assessment process right.

Carer organisations and care experts raised a number of concerns about the concept of the assessment tool, including whether or not the tool takes into account the geographic disadvantage of those living in rural, regional and remote locations; access to support services and networks, both formal and informal; the provision of appropriate aids and equipment, such as wheelchairs and lifting equipment; the psychological impacts and factors beyond a simple assessment of hours of care; the changing care needs as children grow, including episodic care needs and longer term changes; the impact of challenging behaviours and mental health issues on the level of care required; and whether the tool adequately differentiates which parent or family member actually provides the care.

We listened very carefully to the responses given by FaHCSIA when a number of committee members raised these concerns in the inquiry. We do not believe that all of these issues were effectively and explicitly addressed. Some of them have been. We have heard from many stakeholders who do not believe that their concerns were addressed either. FaHCSIA admitted during the inquiry process that the tool did not look at psychological and emotional impact on the carer or assess the access the carer has to support services, networks and structures. This, we believe, impacts on their ability to care. We do not believe that giving carers the opportunity to comment on the disability care instrument after it had been developed was sufficient. We would have preferred them to have been included in the process a lot earlier on. We do not believe that the process was appropriate, given the importance of this tool.

We are also concerned that some of the answers we received during the committee inquiry did not adequately address the issues facing carers in rural, regional and remote areas. We believe this requires much more attention. Take, for example, the response that we got about travel time to appointments. Carers in rural, regional and remote areas in particular have to deal with a myriad of issues beyond just travel time to appointments. They have reduced access to support services, increased costs of living, increased costs of accessing services, restrictions on the availability of respite and support, and many further issues. We are also concerned about the issues surrounding psychological care and psychological impacts on carers. We do not believe that that has been adequately taken into account.

We believe that consideration of the impacts on carers of the lack of availability of aids and equipment is not captured in the simple assessment of an increased care load. For example, if a person with a larger child with a disability is taking longer to care for that child because they do not have a lift to get them in and out of bed or to lift them in other situations, we do not believe simply providing and taking into account extra time is the solution. If the carer, for example, ends up with chronic back pain, is hospitalised or becomes unable to provide care where a simple aid has not been provided—or if the child is dropped and ends up suffering, for example, serious injury—then the cost to the carer, the child and the whole health system is much greater. The focus has to be on assessing care needs properly so we can provide both the right level and the right kind of support. Better assessment should result in much better targeting of care.

Exactly the same issues apply to the assessment of changing care needs and the impacts of challenging behaviour on the demands of care. It is not enough to simply rely on ad hoc measures, as was argued in evidence to the committee, and we hope that changing needs will incidentally trigger a change in assessment and that mental health issues will be picked up in measures for the extent of care required. We need to be more explicit in our use of the assessment tool so that we can take a stronger, evidenced based approach to the provision of services and support to carers and their loved ones. To be clear, while we do believe this legislation’s proposals are much improved, we believe that there do need to be some other improvements.

We understand that FaHCSIA gave an undertaking to the committee inquiry that they would meet with stakeholders to discuss the operation of the disability load assessment tool for children, that it was released during the inquiry process and that at that stage FaHCSIA undertook to consult and continue to work on improvements to the tool. As I said, to be clear, we do think it is a significant improvement, but we think that there could be further improvements. We note that the assessment tool will be a disallowable instrument. This gives the Senate the power to disallow the tool, so we are hoping that stakeholders’ concerns will be addressed prior to it being introduced.

An additional concern expressed by a number of witnesses at the committee inquiry relates to the transition from carer payment (child) to carer payment (adult) and the alignment of the two assessment tools. The Australian Greens support calls made to the committee inquiry for better consistency and a smoother transition between the two payments and support systems. We made that point in our additional comments to the committee inquiry. We believe that further alignment between the tools is essential. There was a commitment made during the inquiry that further work would be done on this issue, and I am keen to get assurance from government that this work is continuing and also a time frame for when we can expect some further work on the adult tool.

Another issue raised during the inquiry was episodic care. The proposed legislation includes provisions that take into account episodic care for those providing care to someone under 16 who requires care for a period of three to six months. We very strongly welcome this change as a much needed reform to what has proved in the past to be a significant challenge to carers and support services. We believe these are sensible changes, but the need for episodic care is not limited to people under the age of 16. Their care needs do not dissipate when they hit this age. Those with episodic mental illnesses are just as likely to have occasional episodes where they require care as adults, and with many other episodic and degenerative diseases there is a likelihood of still requiring episodic care. In fact, this likelihood may increase with age.

The Australian Greens remain concerned by the gap that exists in the provision of care for those with episodic disability or illness. Episodic care can occur not only for those with mental illness but for those with degenerative disease as well. To this end we are seeking to extend these much needed and sensible changes so that they apply to carers of adults with episodic care needs as well. While the changes in the current legislation are predominantly about children with a disability, I note that the title of the bill indicates that it is about support for carers. We think that should be for all carers and that, where issues can be fixed now for those adults requiring care, they should, rather than them being left to a later stage. We are not trying to prioritise one set of carers over another. To this end, I will be moving an amendment to include a provision allowing carers for adults to be eligible for carer payment when caring for a person with episodic care needs. This provision that I am proposing essentially mirrors the provision in the bill relating to the episodic care needs of children.

One issue that I have raised in this place a number of times relates to separated partners sharing the care of children. I was pleased to see that the exchange care provisions were put in place for those carers sharing care of two or more children. However, we are concerned that these provisions do not apply to those parents who are sharing the care of a single child with a disability. The division that is made in the legislation between parents caring for a single child and those caring for two or more children is a nonsense that has no evidence base. This division does not seek recognise the actual care loads and changing circumstances of separated families with one or more children with a disability. It seems instead to create an artificial ideal of separated parents juggling the care of two or more children with a disability to maintain a continuing and constant care load. This seems to me to be a bureaucratic invention whose sole aim is to simplify the administration of carer payments rather than seeking to fix the way in which carer payments are made to recognise the reality of shared care of a child with a disability.

The argument presented to the committee inquiry was that there is currently no provision to receive partial payment of carer payment. This reflects a problem with the current legislative payment system that has nothing to do with the requirements of a real family. For many parents caring for a child or children with disability, the stresses and demands of providing that care have been a complicating and sometimes, unfortunately, a contributing factor in relationship breakdown. Where there is a single child with a disability who requires constant parental care, that need for care does not disappear when the parents separate. Shared care of a child in need of significant care will adversely impact on the ability of both parents to maintain employment, something that I would have thought was fairly obvious.

Our family law system has changed to enshrine a presumption of shared care. Unless these changes are also unrecognised in our social security and disability support systems, there will be a significant risk of serious injustice being done to those caught in the middle—those single children with a disability and their carer or carers. It is unfortunate that I have had to address this issue a number of times. We have changed our family law but we have not changed our support systems and our social security systems to ensure that both parents who provide shared care are not missing out. That is now a requirement under law; but it is not reflected in any other laws, so unfortunately parents who are sharing parenting are missing out significantly. This was caused by the Welfare to Work changes.

The system as currently proposed extends to separated parents of a single child with a disability the injustice that continues under the existing Welfare to Work legislation. Our social security system only recognises one parent as the primary carer, despite the emphasis on equal shared care in child support and family law. As FaHCSIA admitted in evidence to the Senate inquiry, if there was actually 50-50 shared care for one child, neither parent would qualify under the proposed arrangements because neither of them would be providing continuous personal care or meet the qualifications. This effectively means that the presumption of shared care under the family law system will push the separated parents of a child with a disability into shared care arrangements where neither parent is in a situation where they will be able to provide the care the child requires and neither will be able to take on full-time work. This is a ridiculous situation. We have one law saying one thing and another law saying another thing.

There is a real risk that the unintended consequences of this change are that it will disadvantage separated parents. The statistics show that this is probably fathers. When fathers have a single child with a disability, that will stop them from providing shared care. That means the burden of care will fall wholly onto the other parent, and the statistics show that this is predominantly the mother. This is not a good outcome for the child who requires care or for either of the parents. We should be encouraging shared care through carer support payments in our social security system in exactly the same fashion as we encourage it under family law. Are we really suggesting to parents of a child with a disability that they need to have a second child with a disability if they want support?

To this end, the Greens will be moving an amendment to allow both parents of a single child with a disability to receive the carers payment. I will be moving an amendment to include a provision in the bill to allow parents with shared care of a single child to be eligible for carers payment. The provision I will propose follows the same format as the provisions in the bill for the exchanged care of children but extends the eligibility to parents of a single child.

The Greens welcome the move to enable carers of a child to continue to receive the carers payment while the child is hospitalised. This recognises that a child in hospital still requires care. It recognises that the demands on the primary carer to provide support are not diminished and the carer often spends a significant amount of time—if not all their time—helping the sick child to navigate the hospital system and cope with the stresses and demands of a strange, alien and often frightening environment. The proposed changes to the carers payment in this bill allow carers to continue to receive the carers payment while the child is hospitalised, as long as they continue to care for the child. This is a major improvement on the current situation, whereby the carers payment is suspended or cancelled if the child is hospitalised for more than 63 days. The Australian Greens welcome this recognition of the possibility of continuing demand for care during hospitalisation. As I said, we think it is a very significant improvement. We do remain concerned, however, that this provision only applies to children below 16 years of age, when clearly there will be many circumstances where the carers of adults will also face similar situations. In fact, I have had many constituents raise this issue with me. (Time expired)