STANDING COMMITTEE ON SOCIAL ISSUES
Report: Inquiry into Services Provided or funded by the Department of Ageing,
The Hon. JAN BARHAM
Disability and Home Care
[5.10 p.m.]: I move:
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.
The Hon. MARIE FICARRA
(Parliamentary Secretary) [5.25 p.m.]: The Standing Committee on Social Issues had the privilege of examining the quality, effectiveness and delivery of the Department of Aging, Disability and Home Care services, the extent of unmet need, flexibility in client funding arrangements, the need for improved individualised service delivery, compliance with disability service standards and the adequacy of complaint handling, grievance mechanisms and Department of Aging, Disability and Home Care funded advocacy services. Throughout the inquiry we heard evidence that solidly established the need for disability services to be delivered in a person-centred manner. I am happy that Minister Andrew Constance, in a Liberal-Nationals Government, has followed that path, as clearly it was not happening in many cases. Individualised funding provides improved choice, flexibility and control for service users, especially in the area of supported accommodation where, sadly, people had to reach crisis point before action was taken.
Planning, service delivery, support and quality of care from the Department of Aging, Disability and Home Care and related agencies must be improved. It is essential for the disabilities service system to recognise and support the contribution of so many unpaid carers on which the system depends—at least 750,000 carers that we know about. Processes must be established to prevent carers from reaching breaking point before they receive assistance. I acknowledge the work of Andrew Constance, the current Minister for Ageing and Disabilities, in driving the carers' recognition legislation through this Parliament when in opposition. I thank him also for his consultation with people with disabilities and carers in paving a way forward in particular with individualised assessment and funding packages. This inquiry benefited greatly from the 120 submissions received and gained an insight into unmet need in metropolitan, regional and rural New South Wales. Service users, carers and families depend on respite and advocacy services. Pressure will only increase with our ageing population and the proportion of persons with disabilities living longer.
This committee recommended that an increase of $2.5 billion be provided for the effective implementation of Stronger Together II, including the committee's recommendations. Navigating the disability service system and its poorly communicated eligibility criteria, intake and assessment rules, together with inconsistency across and within the Department of Aging, Disability and Home Care regions, with no tracking system for referrals and frequent repetition of assessments, is demoralising and physically exhausting for people with disabilities and their families. Lengthy delays cause duplication of administrative processes adding cost, especially when referring professionals are involved. The committee recommended a review of intake and assessment processes to improve eligibility, fairness and consistency. Transition policies and the associated planning should be reviewed to ensure that better accommodation and service delivery options are provided. To alleviate disadvantage in the current system the committee recommended that the means testing currently used to assess eligibility include expenses across multiple services provision to better reflect actual financial need.
Too many people continue to live in government-operated large residential centres with congregate care provision not complying with New South Wales disability service standards. Devolution with individualised planning, as has happened in many non-government organisation settings in New South Wales, along with disability accommodation interstate and overseas are vital. Home modification and maintenance services allow people with disabilities to live with dignity. The lack of occupational therapists and underfunding has caused delays in assessments. Poor quality work as a result of unlicensed building work must be stopped immediately. The Committee recommended an annual compliance return by service providers to ensure clients are not being disadvantaged and a review, including consultation with stakeholders, to address non-compliance with the Home Building Act 1989, waiting lists and improved streamlining of application processes.
Although 36 per cent of people from non-English speaking backgrounds have a disability, only 5 per cent access Ageing, Disability and Home Care services. The lack of culturally appropriate information and services is not the sole reason for this. Many ethnic groups have a strong belief that they alone should look after their family members with disabilities. We must do a better job of informing them of their rights to ask for help. Likewise, we must do more to address the provision of culturally appropriate services for Indigenous people. There has been a commitment by Ageing, Disability and Home Care to employ and train more Indigenous staff, together with improved culturally sensitive training. Ageing, Disability and Home Care should incorporate diverse measures and outcomes in all program guidelines, together with making available free interpreter services.
Concern for persons with disabilities living in substandard unlicensed boarding houses has led to a recommendation that these people receive person-centred planning and services that comply with New South Wales disability services standards. Many such places may be operating illegally and the most vulnerable in our society need better care. Feedback on the provision of aids and equipment by Ageing, Disability and Home Care and NSW Health tells us that delays of up to two years are occurring, together with a huge amount of unmet need. This has a devastating impact on peoples' quality of life. The committee recommended that interest-free loans for equipment be investigated. Clearly, this area of service provision needs increased funding.
It became clear from many witnesses that Ageing, Disability and Home Care has been unable to monitor and act quickly with regard to breaches of standards. Staff training on New South Wales disability services standards and the complaints handling processes need improvement. The committee supported the recommendation made years ago by the New South Wales Law Commission that an independent organisation be established to accredit and monitor disability services and to undertake complaint handling in order to eliminate the conflict of Ageing, Disability and Home Care being both the funder and regulator of services. The committee also found that Ageing, Disability and Home Care had a conflict in relation to advocacy services. We recommended that this service be transferred to a department independent of disability services.
The high turnover in disabilities staff has been of concern for many years. The committee recommended that funding for the Ageing, Disability and Home Care Workforce Recruitment Strategy be extended for a further two years. Further, the committee recommended that a cross-sector working party be convened to develop a workforce retention strategy. The challenges of rural and remote area recruitment and retention may need increased funding. Equal pay principles for government and non-government disability sector workers are supported. Much client feedback led the committee to recommend that training, reporting and accountability processes need to be improved for homecare workers. A three-year survey of users, carers and their families is recommended to be undertaken by Ageing, Disability and Home Care to better plan and cater for unmet need throughout New South Wales.
I thank our chair, the Hon. Ian West, who is no longer a member, for his sensitivity and professionalism in the management of the diverse personalities of his committee members. I thank the committee secretariat, Rachel Simpson, Emily Nagle, Kate Mihaljek and Lynn Race, for their management of the inquiry process and preparation of the committee's report. In particular, I acknowledge the incredibly valuable and heartfelt contributions of the service users, those with disabilities and their carers, who shared with us some of their most personal and difficult circumstances which highlighted the inadequacies of the disability system. I look forward to the Government moving forward to Stronger Together II to improve the standard of disability service delivery and to ensure a quality person-centred approach is taken that assists people to live fulfilling and healthy lives, both physically and socially.
Dr JOHN KAYE
[5.34 p.m.]: I echo the remarks made by the previous two speakers, in particular, my colleague Jan Barham, on the report of the Standing Committee on Social Issues dated November 2010 on services provided or funded by the Department of Ageing, Disability and Home Care, known as ADHC. Serving on this committee and interacting with people who have disabilities, the people who represent them, service providers and policymakers in relation to one of the most complex activities of government, that is, providing services and quality of life for people with disabilities, was both an emotional and uplifting experience. This report is important because it goes to the heart of a difficult problem. How, within a budget, do we provide quality services to people with disabilities? More importantly, how do we provide services in a way that enhances their self-respect and sense of self?
It is fair to say we are dealing with the most vulnerable people in society. It is important that we provide quality services that recognise their essential humanity and human rights. Some progress has occurred at a policy level in the area of spending. I pay particular respect to former Minister John Della Bosca, who took disability services through a quantum change both in funding commitments and a policy change that began to focus on individuals and the rights of the aged, the disabled and homecare clients. However, we still have a long way to go, particularly at the point of delivery. I echo the comments of Jan Barham and the Hon. Marie Ficarra in identifying some of those key areas. Words and money are well and good, but if services are not delivered in a way that specifically address the needs and human rights of individuals we are largely wasting our time.
I strongly support the findings of the report. It identifies a number of ways forward in order to begin the process of improving service delivery. In particular, I pay tribute to the chair of the committee, former member Ian West, who put a lot of emphasis on the United Nations Convention on the Rights of Persons with Disabilities. In framing our report, the questions we asked and the outcomes we achieved were at the centre of our deliberations. Too often, that United Nations convention is honoured in the breach rather than in its fulfilment. It is time we made that the centre of all policymaking.
In the time that I have left to me I want to focus on the issues of transition for people with disabilities to school, from school to work, from hospital to home and into group housing. In each of those areas we heard a similar story. We received evidence from government, service providers, doctors, educators, housing providers, clients and client representatives. While the policy viewed in a vacuum looked attractive and seemed to achieve the right outcomes, when it came to delivery there were holes. A great deal still needs to be done in order to mend those holes. In the transition to school, for example, while the Department of Education and Communities does a great deal of excellent work in educating children with special needs and providing support opportunities, it is clear that in many circumstances parents find it extremely difficult to find an appropriate placement for their child. An array of opportunities exist. What seems to be missing in this area, as in so many other areas, is to make people aware of the options available and what those options mean to them.
We need to create a knowledge space for people with disabilities and their carers to understand the availability and significance of the options available to them. Coordination between agencies is crucial, particularly in the education area, between the Department of Education and Communities and Ageing, Disability and Home Care; in the transition from hospital, between the Department of Health and Ageing, Disability and Home Care; and in transition to housing, between the Department of Housing and Ageing, Disability and Home Care. Early planning for transition is also important. As the Hon. Marie Ficarra alluded to, too often the transition situation is allowed to reach crisis point and then there is a crisis solution. Well-planned solutions are always superior.
Recommendations 11 to 17 are important, and I urge the Government to take a very close look at them and develop plans for implementing them, particularly with respect to education. We heard heart-rending stories about the inappropriate outsourcing of children's placement. In one case, the Spastic Centre had responsibility for the placement of children with special needs, including children with intellectual disabilities, which created a total mismatch between the agency and the sorts of people it served. In the transition from home to hospital there is great concern about a lack of clarity regarding responsibilities exercised by hospital social workers and by Ageing, Disability and Home Care caseworkers. The situation needs to be clarified as soon as possible so that one or other of the agencies has responsibility. The report's recommendations suggest that the responsibility go to Ageing, Disability and Home Care, which has a better understanding of the environment outside hospitals.
In the case of accommodation, it is very important that appropriate accommodation be identified and people placed in it. We heard a heart-rending story of a 50-year-old woman with Down syndrome who was living happily in accommodation and then a man with inappropriate behaviours was placed there, which effectively drove her out. The housing provider did not respond in a sensitive or people-centred way; it responded in the old-fashioned systems-oriented way and said, "That is where this person goes." The outcome was that a woman who was comfortably settled with a number of friends and who was doing very well was driven out of her accommodation.
The last area I will address briefly is transition from hospital and the need for better data sharing between the Department of Health and Ageing, Disability and Home Care. Obviously data privacy should be protected. However, the current interpretations of data privacy differ between the Department of Health and Ageing, Disability and Home Care, creating conflict and reducing the opportunities for individuals to have their case files transferred in a way that would assist their transition from hospital into housing and the health service. These recommendations provide a sensible way forward.
I conclude by thanking my colleagues, particularly the chair of the committee, the Hon. Ian West. I miss him a lot. He was a great member of this House who, particularly in his role as the chair of the Standing Committee on Social Issues, provided dignified leadership. He steered the committee through some very difficult hearings and treated with dignity the individuals who came before the committee. Trevor Khan, Greg Donnelly, Marie Ficarra and Helen Westwood were able colleagues on the committee. As we always should and always do, I finish by thanking the secretariat staff, who did a remarkable job. The indefatigable Rachel Simpson, Emily Nagle, Kate Mihaljek and Lynn Race kept us going through the inquiry and wrote a rather astounding report, which I hope the Government takes seriously and implements.
Debate adjourned on motion by Dr John Kaye and set down as an order of the day for a future day.
Pursuant to sessional orders Government Business given precedence.