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Community Affairs References Committee
Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia

GARDNER, Miss Tammy, Chief Executive Officer, Huntington's Victoria

JONES, Mrs Ann, Board Member and Immediate Past Chairperson, Huntington's WA

WALTER, Mrs Raelene, Executive Director, Huntington's WA


Evidence from Mrs A Jones and Mrs Walter was taken via teleconference—

CHAIR: Do you have any comments to make on the capacity in which you appear?

Mrs A Jones : I am a current board member of Huntington's WA. I am also on the national board. I am also international president of Huntington's at the moment, and I am a long-term carer.

CHAIR: Thank you and welcome. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to everybody. Miss Gardner, I will invite you first to make an opening statement, and then I will go to the Western Australians.

Miss Gardner : On behalf of the Huntington's community, I would like to thank the Senate committee for the opportunity to appear here today. Huntington's disease and its devastating impacts remain relatively unknown, often categorised with other more well-known progressive neurological diseases. Speaking here today provides a platform of awareness-raising for the specific issues related to those living with Huntington's disease in care.

Huntington's disease is a fatal genetic neurodegenerative disease that results in brain cell death. The disease affects global executive functioning, inclusive of cognitive, physical, emotional, behavioural and psychological symptoms. As of today, there is no cure. There are limited medical interventions to minimise these symptoms and assist in the management of them. There is a juvenile form of Huntington's disease, which presents during early childhood and/or adolescence and is more rapidly progressive. Each child of an affected parent has a 50 per cent chance of inheriting the huntingtin gene. This is a younger persons disease, with Huntington's Victoria currently assisting people ranging between the ages of 16 and 55. There are some older members of our community, but they are quite rare.

Huntington's disease typically occurs at the point of early to middle adulthood, when individuals are completing studies, establishing careers, entering relationships, and establishing homes and families. This is normally a high cost time in anyone's life, and the extra costs of health care, medications, aids, equipment, uncertain employment status, early enforced retirement, and uncertain living arrangements including residing in residential aged care, are obvious ways in which Huntington's disease has an economic, social and psychological impact on the people living with the disease and their families.

Given the progressive nature of the disease, the needs of the Huntington's population will only further increase the demand for suitable services and accommodation options. Heightened community expectations and individual choice have increased the emphasis on maintaining and supporting a person's participation and independence within their own community or accommodation setting. However, despite the best intentions of all government bodies, those living with Huntington's disease and its unforgiving progression continue to be inappropriately placed in aged care facilities due to the lack of alternative age appropriate options that have the skilled staff to meet the particular needs of this population.

Huntington's Victoria recognises the complex dynamics of the current fragmented and multilayer service sector environment and the innate difficulties in trying to establish a coordinated approach across the health, mental health and disability systems, which have already been mentioned this morning. Huntington's Victoria would therefore suggest an informed, comprehensive consultation process resulting in the termination of the silo approach and the introduction of a centralised, coordinated approach to meeting an individual's needs.

Mrs A Jones : I would like to thank the committee for giving me this opportunity to address you on behalf of the Huntington's community in general. My husband was diagnosed in 1992 with Huntington's, and passed away in 2009. I cared for him at home until the last eight months, when he was admitted to an aged-care facility. At the age of 65, he passed away. We have a daughter, aged 48, who tested gene positive in 1998 and was diagnosed symptomatic in 2006. Our other daughter, aged 42, tested gene positive in 1999 and was diagnosed symptomatic in 2012. Both are single and living independently with no children, although the older one does have some care now coming in to assist.

The challenge now facing the HD community is the apparent increase in the number of younger people being diagnosed as symptomatic much earlier, and this is particularly evident if the gene is inherited from the father. Carers often have to care for their partner for a long period of time, and many of these carers, such as myself, will be faced with the ongoing prospect of caring for their adult children and even grandchildren. I experienced watching the lengthy decline of my husband emotionally, cognitively and physically while at the same time supporting both my adult daughters through the predictive testing program, their ultimate gene positive results and symptomatic diagnosis. Throughout the period of my husband's illness, we were engaged with 20 agencies and medical professionals involved in his care. This meant dealing with government department personnel, service providers, medical professionals and all of the associated services. While most were well-meaning, they lacked knowledge of the complexities of Huntington's disease, which was both frustrating and time consuming for everyone concerned. I can reiterate that the other carers I am involved with all say the same.

To maximise the best possible outcomes, it is vital that a person with HD has a nominated advocate with them when they have any interviews concerning their care. The person may appear to understand a conversation; however, they will often forget what has been said or not fully understand the implications of any decision they may make. Where Huntington's manifest with medical or behavioural issues, it may be impossible for the affected person, or sometimes persons, to be cared for at home. At the same time, the behavioural and ultimately high level of care issues make access to appropriate residential services very difficult and significantly impacts planning for good care outcomes for all concerned.

Aged-care facilities are also often reluctant to accept people; they may feel they are disruptive to other residents. Visiting a family with Huntington's in an aged-care facility can have a profound and devastating impact on the extended family members, particularly those at risk and young children. An adequately funded residential facility with trained staff specialised in Huntington's disease would not only enable these young people to maintain some independence but it would also provide a family friendly environment and a sense of hope, not only for the individual but also their extended families. The issue of providing suitable accommodation facilities for young people has been raised over many years with successive state and federal governments. Access to adequately funded residential care needs for young people with Huntington's disease is now critical in Western Australia, and action to meet this need is now well overdue and urgent. Thank you very much for allowing me to this opportunity.

Senator REYNOLDS: Thank you very much, both of you, for your testimony. I am not sure whether this is a question for Mrs Walter or Mrs Jones. Having looked at your submission, you are saying that in WA there are 44 members in residential aged care facilities and that 21 reside in appropriate accommodation, obviously with the rest not being appropriate accommodation. Could you expand on that more for us in terms of what characterises the difference between appropriate and inappropriate accommodation. What is the difference in support and services?

Mrs Walter : In the case, for example, of the specialised Brightwater group care facility, there are two levels of facilities. One is called Kailis House—it is able to cater for six people who are not able to live independently but who are still able to partake in community activities and also in the activities of the home. Their staff are able to support those people well in living their life well. In relation to Ellison House, that is for higher care needs and, again, the staff are very in tune and understand Huntington's very well and are able to respond to the residents' needs, including behavioural difficulties. As Ann referred to earlier on, sometimes people with Huntington's have behavioural difficulties and, by staff being able to respond well, those difficulties can be minimised.

Senator REYNOLDS: We have just heard from Multiple Sclerosis Ltd and from many other people who have given testimony—some in relation to the NDIS and some in relation to their own organisations. It seems that the difference is being somewhere where they not only understand the nature of the particular disability or illness, but in then having the capability to provide the services and the support that is required. Has that been your experience?

Mrs Walter : I think the environment makes a difference. There is absolutely no doubt about that. For example, Kailis House is a relatively new facility, and people there have individual rooms. The MS facility in Bunbury where there are also people with Huntington's also has an independent area where someone can live and their family is able to come. The importance is that it is not only for the individual, it is also that the family members are welcome. For example, at Kailis House, with some of the family members the children would be as young as five and six. Having a more relaxed and conducive environment certainly makes a difference for people being able to visit. It really is a range of factors: well supported staff, families being able to be engaged well, children feeling welcomed. Building design would also make a big difference to that, as well as the options for what people are able to do whilst they are in residence at the facility.

Senator REYNOLDS: You are in WA, where the My Way and NDIS trials are underway. Have you got any observations about your engagement with one or both of those? Are there any things you would like to share with us?

Mrs Walter : In relation to the trial areas, we do not have very many families with Huntington's disease who are actually in those areas, but we keep in contact with the development of those areas. For example, we had a presentation recently by the NDIS in the hills area around to all the neurological agencies where our offices are. One of the points we were making that we felt was extremely important was the service providers or coordinators in the area actually understand the degenerative nature and condition of Huntington's disease very well. And Ann has referred to—earlier on—the importance of advocates, or the engagement of advocates. As we say in our submission also, we need service providers to check out whether there is an advocate in place because, whilst in the interaction the person may appear to understand, they will not necessarily understand the full ramifications of the conversation that is going on.

Senator REYNOLDS: Thank you.

Senator BILYK: Thank you very much for your submissions. Just for your information, back in the 70s, I actually traced back to where Huntington's disease first appeared in Tasmania, and I worked for Eric Cunningham Dax doing that job. So I do know a bit about it, but my information is 30 or 40 years old; I am sure there have been changes. In the Huntington's WA submission, I noticed that you talked about the individual support packages. You commented that people have to wait up to two years—with Huntington's being what it is, that to me seems really crazy—really crazy. Because it is degenerative, people's needs change, but you also need that care package up-front. Would anybody like to make a comment with regard to that? And, obviously you would like to see it happen more quickly, but what else you think we could do? What other recommendations do you have for the committee, to help in this area?

Mrs Jones : Well, I do not think that only applies to Huntington's disease.

Senator BILYK: No, it does not. That is quite true.

Mrs Jones : I think here in WA that is across the board with funding—people having to wait lengthy times to actually get the funding. I have been aware just lately of a situation where there are two beds available in a particular facility that are still empty and have been empty for a considerable time, because they are waiting on people with appropriate funding to be able to use those beds. And that is not particularly related to Huntington's disease, but it is a situation that does apply in many areas.

Mrs Walter : Can I also say—just back on the situation around people being able to access appropriate packages—that Huntington's WA facilitates an inter-agency meeting of all the organisations. One of the issues that we look at where there are beds—particularly in the case of Brightwater, say, if a bed is coming up or has become vacant—is who would be the priority. Now, it is really difficult to watch people who are having to work out marginal priorities of one person above another person. That is why in our submission we are really saying we could double the residential facilities that Brightwater currently provide, for example, and fill them. But it is almost heart-rending, actually, to have to watch professional people work out the marginal priories of one person above another when, really, they all have priority. And I think it is also concerning to hear, also at these meetings, how applications have needed to be submitted and rejected, and resubmitted and rejected, and resubmitted and rejected. I really think we need to find a better way around this.

The other thing we tried to emphasise in our submission—and that I really feel—is we have a whole cohort of people that are starting to move through. Even at Huntington's WA, we are starting to get more and more families. To give you an example, in one six-month period, we had 45 new contacts. Now that is not just people who have the disease individually, but it could be their family members, their children, their youth and so on. But really what I am saying is, we are finding the actual demand for our service has grown exponentially. And we know that the residential care facilities that are needed in Western Australia are just not there. We also know that aged-care facilities will sometimes not take people with Huntington's because if there are behavioural difficulties, then the people can be disruptive for other residents, and staff do not know how to manage that difficult behaviour. I guess we are really pleading and really want to stress that it is really urgent. We would welcome it if the committee is able to make some recommendations to do anything about the current situation. It would definitely be of great benefit to not only the Huntington's community but also the broader community.

Miss Gardner : ISP packages are essential to preventing early admission to accommodation, whether it is aged care or whether it is disability. We have been extremely fortunate in Victoria, where we have had approximately, until the introduction of the NDIS, 40 specific Huntington's packages across the state. That is by no means enough, but what it has enabled us to do is work very closely with a region of the Department of Human Services to advocate very strongly for people who we know are a priority. We find that when we are able to access a package early on—and this might relate to some of the evidence you have already heard from my colleagues this morning—we are able to prevent a crisis from occurring, a deterioration in disease and so forth, so then that person has an extended period of time within their own environment.

The packages also move with the person, so when they do end up in care—whether it is disability accommodation or aged care—we then utilise that package to ensure that young person is able to maintain some activities and community access that are related specifically to them. Where we have worked really strongly is with the NDIS, before it commenced, and we have had a great deal of goodwill from them, I have to say. I have some of my team here today who regularly mosey up the highway to Geelong to sit down and meet with the team to try and get the best outcomes for our individuals through the NDIS. There have been much better outcomes through that than there have been through ISPs, because you are able to access the appropriate funding to meet the needs as that specific time and are able to see, perhaps into the future, what some of those needs might be.

Senator MOORE: Thank you to Mrs Walter and Mrs Jones. We were lucky enough to visit one of your facilities a couple of years ago, and it makes a real difference to sit down and listen to the people and see their situation. Miss Gardner, I particularly wanted to get on the record what you have put in your submission about issues around mental health. We received some evidence this morning from Wesley and we talked about those particular issues. An extraordinarily high percentage of people with Huntington's also have quite serious mental health issues. If we could get something on that, because at the same time you talked about your positive experience of the NDIS—bless you for putting something positive about that on the record—

Miss Gardner : I try to be positive. I try.

Senator MOORE: there are difficulties there with the mental health system.

Miss Gardner : The experience of a person with Huntington's is not dissimilar to that of someone with another prog neuro condition or any disability in the multifaceted, fragmented system that we have. I can give you a specific example of a young woman who is actually my age—and I started working with her six years ago—who suffers from terrible mental health issues as well as Huntington's disease. We have had to advocate very strongly for her. No-one would actually claim ownership of this poor woman. I think she was living in the community on one of our packages. There was acceptable and unacceptable risk, but she was able to live there for some period of time, until recently. The hospital sector were not able to manage the situation, the mental health sector would not claim her and the disability sector were not able to manage her situation either. It was not until we put in a complaint with the Office of the Mental Health Complaints Commissioner, which was quite a serious process, to advocate very strongly that this young lady needed some serious mental health assistance that we got help . She was recently placed within the hospital sector for a period of time—not that we are saying that is the ideal outcome; but where else is she able to go?

I think the silo approach to mental health is a hindrance to trying to meet the needs of not only the members of the Huntington's community but also people with other disabilities. There needs to be a coordinated approach rather than, 'If you do not tick this box or meet this criterion then, sorry, we can't assist you.' Thank goodness that as an advocacy body we do not work within those fragmented systems. We try to look at the overall approach. Where we have tried to be of assistance is through the NDIS, through establishing protocols or through working with the Royal Melbourne Hospital—for instance, with their younger-onset dementia clinic—and trying to work out how, within existing funding and systems, we can actually best meet the needs of the person. I think we have had some real positive outcomes around that, but mental health is a real issue for us, trying to actually engage them, not looking at a person's diagnosis but looking at the mental health issues that may be associated with that diagnosis. They are entitled to access.

Senator MOORE: So you are identified as someone with Huntingdon's disease rather than anything else?

Miss Gardner : Yes.

Senator MOORE: Mrs Walter and Mrs Jones, do you have any comment on that issue?

Mrs Walter : I was just thinking as Tammy was speaking, perhaps from a different perspective, in the south-west we have an inter-agency committee. By being able to work with the local medical service, including the emergency department of the local hospital and the psychiatric department there, we have been able to make a real difference in the response of how the medical departments respond. What was happening was that both were saying, 'Not my problem.' In other words, a person with Huntingdon's, whilst they were psychotic at the time, would not be admitted by the emergency department, nor would they be admitted by the psychiatric area. Luckily, over a couple of years Huntingdon's WA has been able to work with the community, and we have inter-agency meetings there and have been able to address that problem. So there is really a systems response. When there was a similar case recently, the response from the emergency department and from the psychiatric unit was just fabulous from the association's point of view. It really met the client's needs; the client was calmed down and was able to be returned eventually to a nursing home. I would like to emphasise that that was a lot of work over a couple of years to be able to change that systemic response and to ensure that it is maintained.

CHAIR: Thank you very much for coming today and for your submissions.

Mrs Walter : We really appreciated the opportunity.

CHAIR: I do not think you accepted any homework, did you?

Mrs A Jones : We are open to requests for more information.

CHAIR: You have given us comprehensive information now and in your submissions.

Proceedings suspended from 12:37 to 13:08