Standing Committee on Social Issues Report
Disability and Home Care
- That this House take note of report No. 44 of the Standing Committee on Social Issues entitled “Inquiry into services provided or funded by the Department of Ageing, Disability and Home Care”, dated November 2010.
I make a contribution to debate on the Standing Committee on Social Issues inquiry into services provided or funded by the Department of Ageing, Disability and Home Care. I commence by acknowledging the House for supporting the referral to this committee. All parties—Labor, Liberal, The Greens, the Shooters and Fishers, and the Christian Democratic Party—saw the value of the social issues committee undertaking this inquiry. It will be an invaluable body of work as this Parliament moves forward in considering how to greatly improve disability services. I acknowledge the work of the members who sat on the committee and I note that the committee unanimously supported the report. Committee members were the Hon. Ian West, the Hon. Trevor Khan, the Hon. Greg Donnelly, the Hon. Marie Ficarra, the Hon. Helen Westwood and Dr John Kaye. I also acknowledge the committee secretariat, which has done an exceptional job in delivering this important report. I applaud the many families and people with disabilities who made submissions to the inquiry.
Sometimes users of Department of Ageing, Disability and Home Care funded and provided services face further difficulties in accessing services when they raise concerns or make complaints. In the face of such fears, many still came before the committee to tell their stories—often very personal and difficult stories to share with strangers, let alone parliamentary committees. This was a very important inquiry to New South Wales and it was long overdue. The inquiry represented a broad examination of ageing and disability services in New South Wales. The inquiry was particularly pertinent, given the investigation by the Productivity Commission into disability care and support, and the potential architecture of the National Disability Insurance Scheme.
In New South Wales we have an opportunity to overhaul the delivery of disability services. We have a chance to ensure a greater number of people have improved access to services that enable them to live their lives more fully. This will require months and months of consultation, political and personal vision, and a commitment to acknowledge that there is no silver bullet, just people with diverse needs who want a chance to be a part of society. We must have robust debate and honesty about our priorities in New South Wales. The inquiry was in part a response to the deficiencies in our disability service. While there has been great improvement in the first five years of Stronger Together, and the funding commitment for Stronger Together II will build on this improvement, there are still holes in our crisis-driven system. Unmet and undermet need, lack of person-centred service delivery, gaps in planning and service evaluation, asymmetry in regional service delivery, and deficiencies in complaints and compliance management are all characteristic of elements in our disability services.
The 55 recommendations of this inquiry traverse a wide range of areas within disability services. While time does not permit a full discussion of each recommendation, I wish to discuss a few key themes in the report. As I have already placed on record my thoughts on complaints and grievance handling and compliance, I will not cover those aspects of the report. Recommendation 1 cuts to the very core of identifying, acknowledging and managing unmet and undermet need. I strongly support amending the Disability Services Act 1993 to require the biannual disclosure of data on unmet and undermet need and the conducting of service user and carer surveys every three years.
Our communities want a clear picture on whether people are having basic human rights fulfilled, rather than having to wade through oblique department doublespeak and bureaucratic mazes. We need honesty and transparency about the level of unmet and undermet need to encourage prioritisation of disability services and fulfilment of human rights. I am encouraged by the work of the department and the Minister in taking the first steps towards gathering this data, and I look forward to the New South Wales Parliament starting a dialogue on how individuals and families can get the most out of the underinvestment in disability and ageing services.
Stronger Together has in part addressed the gross underinvestment in disability and ageing services. It has started to bridge the gulf between borderline neglect at one end of the service picture and service delivery enabling full social inclusion and real livelihoods. However, where we fall on that spectrum is a matter of debate. The Executive Officer of the Disability Council of New South Wales notes that things have improved but “we still have an awful long way to go”. Ms Christine Regan, Senior Policy Officer with the Council of Social Service of New South Wales, pointed out to the committee that a doubling of the Department of Ageing, Disability and Home Care budget only created a 19 per cent increase in the number of people using disability supported accommodation.
There remains a strong consensus in the sector, from the Director General of the Department of Ageing, Disability and Home Care and peak organisations down to small specialist non-government organisations and advocacy groups, that there is unmet need in our disability services. The implication one can draw from this consensus is that our disability and ageing services remain underfunded and inefficient, leading to the predominance of crisis-based intervention. Damian Griffis, Executive Officer of the Aboriginal Disability Network, pointed out that the level of unmet need for disability services in Aboriginal communities is even more acute, particularly beyond Newcastle, Wollongong and the Blue Mountains where half the New South Wales Aboriginal population live. Support for recommendations 8 and 31 to 34 is an important first step to opening up greater access to disability services for Aboriginal people. Recommendation 33 refers to provided and funded services for cultural competency training, to enable people to work more effectively with Aboriginal and Torres Strait Islander people and people from a non-English speaking background. A theme that seems to be running through many reports is that we need cultural training in so many areas.
According to the Deputy Director General of the Department of Ageing, Disability and Home Care, more than 8,000 people do not have access to a disability service which they require, although 50 per cent of those 8,000 have received another type of service from the department. This demonstrates that approximately 4,000 people in New South Wales have undermet need. Importantly, of that group of people approximately 780 had received no service at all, and of those who received no service at all approximately 50 per cent waited longer than six months to receive a service. Some may brush this aside as a small minority of people not receiving adequate services, but if we think about the implications of plunging whole families into crisis or exposing them to the intense pressure of non-provision of service, we can see the significance for human rights in New South Wales.
Characterising the full extent of unmet and undermet need remains a live point of debate. The Department of Ageing, Disability and Home Care suggests there is a lack of reliable data to measure unmet need, yet organisations such as the Council of Social Service of New South Wales dispute this and suggest the problem lies in Department of Ageing, Disability and Home Care processing and analysis of data. Recently I received a response to a question I placed on notice for the Minister for Disability Services, and from the response I am inclined to support the assertion of the Council of Social Service of New South Wales that the Department of Ageing, Disability and Home Care does not sufficiently analyse the data it collects. At the end of the day, the committee acknowledged that there was evidence of significant unmet need in a number of key service delivery streams.
One potential measure of unmet need is waiting lists or service request registers. The committee examined the issue of waiting lists and heard evidence about Home Care Service NSW not maintaining waiting lists despite a 2005-06 New South Wales Public Accounts Committee inquiry recommendation to maintain them. The idea that people are required to call back on a daily basis to check whether a service is available is demeaning and ludicrous. Further, the lack of transparency around prioritisation criteria creates a high level of mistrust. However, I accept some of the problems associated with waiting lists and the disincentive to leave services. Recommendation 29 is a sensible way forward in developing a consistent policy on waiting lists. The Minister should adopt a presumption in favour of waiting lists and have only a small set of circumstances in which waiting lists will be not be used.
Another important theme of the inquiry was discussion of a person-centred approach to disability services. A number of recommendations are geared to refocusing how the Department of Aging, Disability and Home Care structures its services. When we talk about a person-centred approach to disability services we are talking about designing services around individuals, their families and their needs rather than a one-size-fits-all approach. Roz Armstrong, an official community visitor in northern New South Wales, suggested to the committee that New South Wales is yet to deliver any really good examples of person-centred planning, especially by Department of Aging, Disability and Home Care service providers. Ms Armstrong told the committee:
- … individual planning goals are more about meeting service objectives rather than focusing on individual support needs. This occurs in both ADHC funded and ADHC provided services.
Service users, carers and service providers provided anecdotal evidence about the lack of person-centred approaches being implemented by the Department of Aging, Disability and Home Care. Carolyn Mason, a mother and primary carer, stated in relation to a person-centred approach:
- It should never be accepted practice to physically and/or chemically restrain as a substitute for professional care and treatment or to simply make the job easier for poorly trained, inexperienced or unprofessional staff or in the absence of quality care and service provision and person-centred planning.
Janice Marshall, another mother and carer, made a similar point that service delivery is crisis driven, which in turn restricts the ability for future planning around the needs of individuals. She said:
- Parents have to die, be seriously ill or abandon their loved one to even get into the system. This crisis-driven scheme causes widespread mental and physical illness within the families and often leads to family breakdowns, which ends up costing the State and ADHC even more money than if they actually funded the accommodation in the first place.
Recommendations 7 to 10 make important suggestions for reform and development of planning approaches. Importantly, we can see this focus on data collection and research and analysis even in the context of improving person-centred approaches. Greater planning focus on person-centred approaches inevitably leads us to the dialogue on individualised funding. While the New South Wales Disability Service Standards and the United Nations Convention on the Rights of People with Disabilities articulate a vision of supporting individual needs with responsive services to remove social barriers, the practical reality of service delivery historically has allowed very little room for individualised funding packages. Individualised funding has the potential of increasing flexibility in service delivery and encouraging greater choice in services.
From the report it is clear that the committee spent a deal of effort considering how individualised funding may work in New South Wales and the benefits and pitfalls of such an approach. Other jurisdictions are much more advanced in disability service provision and delivery than New South Wales, and we need to draw on their experiences. The current Minister for Disability Services, the Hon. Andrew Constance, and the former Minister, the Hon. Peter Primrose, both made it clear that we must move ahead and modernise disability services to give a voice to essential human rights. I look forward to working with all members, all stakeholders and all people with disabilities on reforming our disability services.
Moving away from the big picture themes of the inquiry, the committee spent a considerable amount of time considering a number of key challenges in the disabilities portfolio. Devolution from large residential centres, lack of funding and efficient management of the Home Modification and Maintenance scheme, vacancy management in supported accommodation and monitoring effectiveness for licensed boarding houses are just some of the ongoing policy changes that New South Wales needs to confront. The New South Wales Parliament needs to ensure ongoing discussion and consultation to address specific issues. In conclusion, I express my support for and appreciation of those committed to enabling people with disabilities to live their lives with their families, carers or sector workers.
Recommendations 51 to 54 focus on ways to improve workforce capacity and skills so as not to overlook those on the service front line. We should encourage those who are considering a career in the disability service sector and give them a real career pathway rather than shifting them up to middle management positions where they are totally alienated from front-line care roles. I encourage all members to read the report. As we move ahead with the reform pathway, which the Minister for Disability Services has aptly started to outline, we should remember some of the lessons unveiled by this report. I commend the report to the House.