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STANDING COMMITTEE ON COMMUNITY AFFAIRS
28/04/2009
Social Security Legislation Amendment (Improved Support for Carers) Bill 2009

CHAIR —We have your joint submission. Thank you very much. What I will ask is if any or all of you would like to make some opening comments and then we will go to questions. Who would like to start?

Ms Pierce —I was going to start. We would all like to thank you for the opportunity to present to the community affairs committee about this legislation amendment. I need initially to make apologies for Maria Bowen, the chief executive officer of Carers Victoria, and Kevin Larkin, the chief executive officer of Palliative Care Victoria. Both would have liked to have been present but could not fit it into their schedules.

There are several things we want to emphasise in our introductory statement beyond our submission. The first is that we agreed as a Victorian partnership to work together some years ago to improve access to carer payments in the interests of our various members. In broad terms, we support the intentions of the legislation.

Secondly, we share particular concerns about the disability care load assessment (child), but we noted from the Senate website that the submission from FaHCSIA provided more information about the disability care load assessment than was publicly available prior to that. As we understand it, the assessment of care load questionnaire will give family carers the opportunity to describe their caring experiences and the details of the care they provide. That has not been possible in previous medically determined assessments and was something that the Network of Carer Associations lobbied strongly for.

We also appreciate the new mechanism allowing treating professionals to complete a professional’s questionnaire and that there are now triggers for the involvement of Centrelink’s carer assessment team when the score is a little bit below the threshold or when there are inconsistencies in the type and intensity of a care load between the care load questionnaire that the carer does and the professional questionnaire.

Having said that, we retain some concern that both the assessment of care load questionnaire and the professional questionnaire are described in FaHCSIA’s submission as assessing ‘functional ability, behaviour and special care needs’ of the person with a disability. The Network of Carer Associations and others have been arguing strongly that care load needs to be conceptualised as much broader than physical or personal care. It needs to be inclusive of care that requires constant vigilance, supervision, encouragement, nurturing and ensuring of medical compliance. It needs to acknowledge that intensive care load can be required for some children with autism, a mental illness or a psychiatric disability and children with severe and challenging behaviours.

I guess I am saying we are not convinced that some of those very needy families will, using the new assessment tools, be able to become eligible when they should. I noticed there was a submission from an ADHD group in Queanbeyan, I think it was, who were putting forward similar issues about the families of some of those very difficult children with ADHD having difficulty becoming eligible for carer payment (child).

Thirdly, we are keen to ensure that carers of children with a terminal illness are protected from signing forms that acknowledge their child’s imminent death. This is a very difficult issue, and we have suggested a separation of certification about the terminal nature of the condition by a medical or other practitioner from the completion of the assessment of care load questionnaire and the professional questionnaire.

Finally, while improvements to carer payment (child) will reduce restrictions to access, we are very concerned about the differences which will continue between carer payment (adult) and carer payment (child). We are hopeful that those anomalies will be remedied as a next step in the reform process. Some of those key anomalies include the need to extend short-term and episodic provisions that are now available for carer payment (child) and carers of adults and the need to remove the 63-day hospital restriction for carers of adults. That has been removed for recipients of carer payment (child), but it is equally important for recipients of carer payment (adult) for people who have a mental or chronic illness. We think there is a case for extending the automatic qualification provision for carer allowance to those who qualify for carer payment to make it equivalent to what is now to be provided for carer payment (child) recipients, and we think there is a need to remove the stress and confusion which will result from the different criteria for access of carers of people with a terminal illness to the carer payment (adult), which is restricted to terminal illness in three months, and from the new provisions for children, which allow 24 months and then some extensions after that. Broadly speaking, though, we are very supportive of the changes to carer payment (child). That is all I have to say.

CHAIR —That is a bit, Ms Pierce. Ms Salau or Ms McGarry, do you have anything to add?

Ms McGarry —Yes, particularly in relation to the assessment tool and the way in which we are hoping that the questions will be able to clearly identify the extent to which parents and family members are caring for their child. We believe that the way in which those questions are couched will be very important in order to capture, from a family’s perspective or a carer’s perspective, the actual care load. It is a lot more difficult to do that if the questions are not couched correctly than it would be if the question was: ‘How many hours are you providing personal care in a day?’ We feel that a significant focus needs to be placed on those questions so that they do accurately capture the level of care that is provided.

CHAIR —Do you have anything else to add?

Ms McGarry —I might leave it at that for the moment.

CHAIR —Ms Salau from Palliative Care Victoria, would you like to make an opening statement?

Ms Salau —I think Gill has covered most of our statements very well. I would just like to stress the fact that the signing of these forms is a real cause for concern for families. In fact, it precludes them from applying in many cases, because they feel they are signing away their hopes of their child surviving, even though they acknowledge that that child may die. So if there is some way that those forms can be separated from the medical assessment or the practitioner rather than the family signing off on that, that would generally assist in supporting families’ access in this case.

CHAIR —Thank you. We will move to questions.

Senator SIEWERT —Thank you for your submission. As with other submissions, I will be asking the department a lot of the questions rather than you. The one I want to start with is the disability care load assessment legislative instrument. I have been asking other witnesses whether they think it is important that the committee think it is on the right track as part of the review of this legislation.

Ms Salau —I would love to see it. We are not convinced that it answers the concerns we have about some of the people that should have been eligible for carer payments but have not got over the bar. In your position, I would be wanting to have a look at it.

Senator SIEWERT —As I understand it, you have not been consulted yet about that.

Ms Salau —I think I read in FaHCSIA submissions that a whole lot of work has been done through the University of Wollongong and there have been some consultations with carers and a range of allied health professionals. Until yesterday I was not aware of any of the detail of how those tools would develop.

Ms McGarry —As the representative from the state Association for Children with a Disability and the national organisation we have not been approached in that area. I would also like to say that I think it would be important for you, as a committee, to see that assessment tool because in doing so you would be able to be sure that the intent of the legislation in fact transfers across to the way in which it is going to be implemented.

Senator SIEWERT —Thank you for that. I would like to ask a question about catastrophic events. You raised that point in your submission. Do I take it from your submission that you do not think that the amendments for short-term and episodic care for children would adequately deal with a catastrophic event?

Ms Pierce —We were concerned that there has been a provision for carer adjustment payments separate to general income security payments which certainly were necessary for some children in catastrophic events. The task force on carer payment (child) and we both thought that there may be a need to have additional access to funds to support families in a catastrophic event outside of income security provisions per se—some sort of different mechanism that might help meet the additional costs for families of a catastrophic event when their means are low.

Senator SIEWERT —There is a need for extra.

Ms Pierce —The carer adjustment payment fills a gap in existing provisions and the gap that it filled may continue despite the improvements in carer payment (child).

Senator SIEWERT —One of the other points that you make is about the barriers for some complex families. Are you able to give us an example of where you think complex families may fall through the gaps?

Ms Pierce —It struck me that there are still boundaries put, so you can care for quite a number of children and one adult. There will be families who are caring for two or three adults whose care load ought to be assessed. How do we make sure that some of those extremely complex care situations are not confronted with boundaries to access?

Senator SIEWERT —Are there specific amendments you would like to see to the bill that would deal with that?

Ms Pierce —I did not consider what amendments might be made.

Ms McGarry —I think it is quite complex to try and identify a real-life situation that you would be able to develop a streamlined process around unless you have been able to gather the evidence prior to that, which we as an organisation have not been able to do. I would suspect that when the caring load is shared between parents and children, particularly those living in two different environments, that would be about the greatest complexity.

Senator SIEWERT —You mean shared care?

Ms McGarry —Yes.

Senator SIEWERT —That takes me on to another area that has been raised—that is, the issue around shared care. In the bill it is for two or more children, whereas the issue that has been raised with us in the other submissions is the issue around a single child.

Ms Pierce —Yes, I think we raised that as well. It depends on things like how the shared care arrangement takes place and also what that means in terms of the access of both parents to employment. There is poor access for families to out-of-school-hours care, particularly for children with a high level of need and, very particularly, for adolescents with very high-care needs. Whether some families who share the care are going to be particularly disadvantaged because they cannot meaningfully access employment is the matter that concerns us.

Senator SIEWERT —Thank you.

Ms McGarry —My feeling, though, is that we could get very bogged down in who is doing what and where, whereas we need to try and maintain the focus on the level of care that is being provided, irrespective of what setting it is in. I would think that that would then make it a more streamlined approach to assessment.

Senator SIEWERT —There is the issue around the continuance from caring for a child to moving to adult care. You make the point about the inconsistency between assessment for eligibility for carer payment and allowance for adults. The point that has been put to us—and you made it earlier too—is that there should be alignment between carer payment (child) and carer payment (adult) and that in fact we should then move to a care load assessment for adults as well so that there is an alignment between the two. You have raised the issue. Would you support that as a remedy?

Ms Pierce —Absolutely. I think we all would.

Ms McGarry —Yes.

Ms Salau —Yes. Particularly around that, I would like to stress the fact that the transition for children with a terminal illness to adulthood is that there is quite a concern that there are quite clearly different criteria for access, one being two years and one being three months. So there is a huge dilemma here when that child changes payment systems.

Senator SIEWERT —Thank you.

Senator HUMPHRIES —You say in paragraph 25 of your submission, ‘it is likely that the amendments will exclude some complex multiple care situations from eligibility for carer payment (child).’ Can you expand on that? In what circumstances might that occur?

Ms Pierce —As we understand it, you can achieve eligibility through a cumulative careload for one or several children, and I do not think there is a limit on the number of children, and one adult. There appears to be a limit on the number of adults. We know that there are some families, probably not many, who have the care of several children and several adults. Often it is one or both of the parents of the child, if that makes sense. We feel that it is important that who is being cared for does not have boundaries of, for example, one adult.

Senator HUMPHRIES —Okay. So you are saying that if a family situation is, say, one child and one adult, they qualify for the payment; but if it is one child and two adults they would not.

Ms Pierce —That appears to be an anomaly. The documentation talks only about one adult, so I would be wanting to make that inclusive of several adults.

Senator HUMPHRIES —That is a sensible suggestion and we will take it up with the department shortly. I was struck by your comment early in the submission that the carer payment (child) has the lowest rate of grant to application ratio of any of the income support payments—only 12 per cent. Assuming that another 19,000 carer payments will be made possible by these reforms, that still lifts the success rate, on my calculation, to about 15 per cent. Do you think that there is room for further reforms in this area to address a large amount of unmet need out in the community with respect to these sorts of care arrangements?

Ms Pierce —I am not sure if I am addressing the question correctly, but my understanding is that FaHCSIA expects that something like two-thirds of the additional people eligible will be people who are receiving some other form of income security payment, and about one-third—I might have misremembered the proportion—will be people who newly become eligible. Is that addressing the question?

Senator HUMPHRIES —In a way, yes, although the other element I was looking for is: why is there such a high proportion of failed applications at the present time? Would you put this down to there being a large amount of need out in the community which simply cannot be met using reasonable criteria for access to income support payments for carers, or is there a large amount of misunderstanding about who qualifies? Why is there such a high failure rate for these applications?

Ms McGarry —The restrictive nature of the eligibility criteria for carer payment (child) has been an issue and, because it is a rather onerous process to apply, and parents talk to each other, that has an impact. Our view is that the automatic eligibility for carer allowance, if an applicant finds that they are ineligible for the carer payment (child) under this legislation, will assist in making sure that those who need support will get it better now than previously.

Ms Pierce —It has been quite problematic with the GP having to fill in the form, because—this is a sweeping generalisation—GPs often minimise the information they provide and they may not have a good understanding of what previous carer payment forms expected. I think the change to allied health professionals, together with new assessment tools, will, hopefully, increase access to carer payment (child).

Ms Salau —There is quite a concern around the forms because they are complex to fill out and if people do not have someone helping them do that, they give up. I think it is very important that we have people prepared to assist them fill out their forms, particularly in the case of a child with a terminal illness. That is the last thing that they want to think about. Even though they are very aware and stressed over their financial situation, they are more worried about their child.

Senator HUMPHRIES —Thank you.

Senator FIFIELD —At the outset, can I say that we are seized by the fact that the care load assessment questionnaire has not been publicly available and that relevant groups have not been consulted. That is something that I think we all intend to take up shortly. Can you help me plug a few gaps in my own knowledge? Page six of your submission mentioned the certification of a child’s terminal illness. Not having seen one of these forms, it is surprising that there are clauses such as ‘not normally expected to survive more than 24 months’. Is a similar phrase currently in the application form for carer payment?

Ms Salau —It is in the new one, but it is definitely in the adult payment. That is actually on the form and asks people to sign off. The new form says ‘24 months’ and it actually asks parents to sign off on that form.

Senator FIFIELD —We will take that up. You are arguing that that should be separated out from the application?

Ms Salau —Yes. We think that that would be a much more sensitive way of doing it. It is really about the process of loss and grief associated with terminal illness and the need to be sensitive to where families are in the process.

Senator SIEWERT —Could you repeat that last comment because the phone line faded out?

Ms Salau —It is really about the complex process of loss and grief that is confronted by families of children, or adults, with a terminal illness and the need to be sensitive to where they are in that process. Separating the questionnaires from some sort of certification about the child’s terminal illness might make that a little easier for the families affected by that.

Senator FIFIELD —Absolutely. It would be a horrible thing to see that written and have to tick a box next to it. In relation to the carer adjustment payments and support for families after a catastrophic event, your submission says that the carer adjustment payment will cease in December 2009. Was that designed for that particular purpose?

Ms McGarry —Yes. It is $10,000 one-off payment in recognition of a catastrophic event. When it happens, basically a family hits a wall or runs into a wall and the normal way of operating as a family—parents working and all the other associated activities of a family—really ceases at that time. Very quickly a family can be confounded with having to deal financially with sustaining a family while at the same time being totally focused on responding to the catastrophic event. Therefore, it is recognition of the severity of those experiences.

Senator FIFIELD —Is that ceasing at the end of the year because it is envisaged that the carer payment (child) for short-term and episodic events will cover that situation? Is that the rationale for its termination at the end of the year?

Ms McGarry —My understanding is that FaHCSIA made the decision to extend the carer adjustment payment to December 2009. I am not sure the others might be aware of how long that has been in operation, but I am not sure of that answer either. One could assume that that is what the department is thinking would happen, but I am unsure at this stage. Originally the carer adjustment payment was almost like a pilot trial.

Ms Salau —If a child is diagnosed with a terminal illness, you can imagine the chaos the family suddenly finds themselves in, and parents will have to stop work while they undergo further treatment for chemotherapy or radiotherapy—intensive care is done in Melbourne. They may be rural and have to cope with this as well. They need this financial assistance now, not while they are waiting for these other payments to happen, so we would be really pushing for this to continue.

Senator FIFIELD —Yes. It is a fundamentally different payment; it is a one-off grant as opposed to a payment which is received fortnightly.

Ms Salau —Yes; and it should be distinguished from the issue of income support; it serves a different purpose.

Senator FIFIELD —Yes. They are two fundamentally different things.

Ms Salau —Yes.

CHAIR —Is there anything that you would like to add that we have not asked questions about?

Ms McGarry —We were concerned about having some clarity around the continuity of qualification, and we would hope that, when a child is hospitalised, continuity of qualification might also include continuity of payments.

CHAIR —Continuity of payments?

Ms McGarry —Yes; that is right, so that it will not necessarily mean then that a payment would be held in a kind of suspension while a child is hospitalised; it can mean that you are still qualified. We wanted to make sure that there was clarity that continuity of qualification also meant continuity of payment.

CHAIR —Okay. Sure. If there is anything that you think that we need to know that has not been covered, please be in contact with the secretariat. We would like to thank you for your submission and for your evidence today.

Ms McGarry —Thanks very much.

Ms Salau —Thank you.

[11.23 am]