Unmet Need in Disability Services: Shortfall or Systematic Failure?


Current Issues Brief 6 1999-2000

Jackie Ohlin
Social Policy Group
28 September 1999

Contents

Introduction

Why is Unmet Need Such an Issue?

Who are the People with Unmet Needs?

The Particular Case of Respite Care

The Role of Advocacy Groups

A Commonwealth Response to Unmet Need

Where to in Dealing with Unmet Need?

Endnotes

Introduction

The issue of unmet need arising from disability is not new. Concern about its extent stretches back over many years. It was a matter of concern for Commonwealth, State and Territory governments for some time, but was probably crystallised into public consciousness following the 1993 National Survey of Disability and a subsequent Australian Institute of Health and Welfare study. The AIHW found that there were an estimated 13 500 people with profound or severe handicap, reporting unmet needs for formal help with self-care, mobility or verbal communication, and unable to receive this help because the service was not available. The figure of 13 500 was considered to be an under-estimate, because of the terms of reference for the study, which specified 'the number of people who would significantly benefit' from provision of a service. 'Significant benefit' may be defined as enabling activity or social interaction.

A further 4500 people with similar unmet needs and in similar circumstances 'did not know of a service'. Also, 12000 people were not able to access a day program to support their need for constructive daytime activities.(1)

The concept of unmet need, in a policy sense, may be seen as a perennial concern (for example, the 'Henderson' Poverty Line as a measure of levels of poverty for the least advantaged in society), or as a tool for focusing government services.

In developing its approach, the AIHW referred to 'unmet demand' and 'potential need'. But there is a strong, common understanding that the term 'unmet need' encompasses a range of views; as the National Disability Advisory Council concludes in its paper Unmet Need - Some Future Directions: 'Unmet need includes people who need a service and can't get it; people who may soon need a service; and people who aren't getting a service who are similar to people who are'.(2) A range of typical services addressing self care, mobility and communication needs is included in a later section of this paper.

This paper also discusses matters relating to advocacy in the area of disability services. The capacity and response of advocacy bodies is critical to the way in which unmet need is addressed by governments. In Australia, advocacy bodies in the disability area (as indeed for much of the community sector) have tended to be 'home-grown', developing in response to perceived need, and remaining in place to cater for ongoing, specific needs of family member and carers. While 'rights-based' advocacy has given rise to some broader public awareness and social change (such as Disability Discrimination legislation, employment access, transport access, etc.), there are particular challenges ahead for most advocacy bodies who must face the reality of significant change in the way that disability services are planned for and delivered.

The paper suggests the need for a coherent, inclusive strategy for planning to address unmet need, in a climate of competing resource demands.

Why is Unmet Need Such an Issue?

The responses to this question range widely. At one end of the spectrum are those most affected (that is, people with a disability and their carers), who generally view as a national shame the apparent incapacity of the Commonwealth and State Governments to adequately provide for the most vulnerable in society.

The Commonwealth-State Disability Agreement is the main mechanism through which the Commonwealth and States/Territories fund services. The first CSDA (1991) was aimed at rationalising the service roles and responsibilities of both the Commonwealth and the States. It was to be a five-year agreement but, in effect, it continued until early 1998 due to problems with the negotiations for the second agreement.

Before the implementation of the first CSDA, responsibility for disability services was unclear. The Commonwealth funded a range of employment, accommodation and community based services for people with disabilities under its Disability Services Program established by the Disability Services Act 1986. At the same time, individual States and Territories provided similar services which resulted in a lack of coordination between the two levels of government and considerable overlap, duplication and confusion. In broad terms the first Agreement:

  • gave the Commonwealth responsibility for employment, training and placement services for people with disabilities, and for print disability services
  • gave the States responsibility for accommodation support, information services, independent living training, recreation services and respite care
  • gave joint Commonwealth-State responsibility for advocacy, research and development and involved both in planning, priority setting and program evaluation.

The second agreement, which came into force in early 1998, built on the first one and was based on a two-tier structure. First, a multilateral element which contains the 'core' disability services which are within the scope of the agreement and for which the responsibilities and roles are clearly defined. Second, there is a bilateral approach which allows the Commonwealth and the individual States to agree on a means of addressing strategic disability issues of particular relevance to that particular jurisdiction. All the governments have agreed to uniform terms and conditions aimed at improving public accountability and quality over the life of the Agreement.

Dispute has arisen between the Commonwealth and States over unmet need, partly as a result of Commonwealth insistence upon 'efficiency' measures as part of the CSDA (without affecting service quality), while States/Territories have argued their 'stretched' capacity to locate further resources for 'big-ticket' items such as accommodation services and respite care. The comments of the Victorian Minister for Youth and Community Services, Dr Denis Napthine, following the April 1999 meeting of Ministers for Disability Services encapsulate this concern: 'Victoria is already stretching its budget capacity yet we know that there are many more people who require services. The Commonwealth collects the vast bulk of taxes. Only it has the capacity to tackle the backlog of unmet need [f]or disability services in our community'.(3) The main effect of the debate over unmet need has been constant postponement of any realistic discussion about how to tackle the issue.

From a community perspective, awareness about unmet need has possibly been heightened by recent publicity, such as the case in New South Wales, of parents 'giving up' to the care of the state their profoundly disabled child, because of their perception that ongoing promises of assistance with care have been unfulfilled. Alternatively, there may be more general awareness of the crisis point approaching as parents caring for children with a disability at home are themselves ageing and potentially in need of care. Whatever the impetus, there appears to be renewed interest in the issue of unmet need, illustrated, for example, by the recent Time to Care National Campaign, sponsored by the National Council on Intellectual Disability.

At the core of concern about unmet need is the fact that there is no national disability plan. Such a plan would need to be developed collaboratively, with all stakeholders and at all levels, local through to national, addressing unmet need as a key part of its development. At the moment, there is only the CSDA, with all of its apparent divisions, and some disparate attempts at local/regional coordination, usually involving service agencies in case management, but not forward planning.

While Governments agreed that unmet need had a priority in the first twelve months of the 1998 CSDA, the only apparent progress to August 1999 has been a National Disability Advisory Council paper (referred to above). The commitment of resources as part of the 1999-2000 Budget extended to the provision of welcome, additional Commonwealth funding for respite care (in the order of $5m per year over four years to expand respite care for carers of young people with disabilities, and an additional $82.2m over four years for respite care for people with dementia and other cognitive and behavioural problems). Three months after the handing down of the Commonwealth Budget, the Minister for Family and Community Services, Senator Jocelyn Newman, unilaterally announced a $150million two-year injection of funds to 'top up' the CSDA, with an expectation of a 'substantial' share to be forthcoming from States and Territories.

Who are the People with Unmet Needs?

According to the 1998 Australian Bureau of Statistics Survey of Disability, Ageing and Carers, 956 600 people with a profound or severe disability needed assistance with the core activities of self care, mobility and/or communication. The major proportion of these (97 per cent) received some assistance to meet their need for help with core
activities-547 000 (57 per cent) had their need for assistance fully met, 384 000 (40 per cent) needed more help than they actually received and 24 400 (3 per cent) received no help at all.

When the support needs of carers are taken into account, although 42 per cent of primary carers say they do not need any assistance, 25 per cent of primary carers do not get enough help, and 41 300 (9 per cent) of primary carers who need assistance do not receive any assistance at all.(4)

The service needs of people with disabilities or their carers might encompass different requirements at different life stages. The following table identifies typical services which may be required/used:

Life stage

Potential service needs

Diagnosis of a child with a disability at birth

Parent/family information and counselling service (e.g. Down Syndrome Association)
Genetic counselling service

Early childhood

Early intervention services
Therapy services
Parental training services
Early childhood education services
Aids/equipment services
Home modification services
Respite care services
Transport services (e.g. Maxi-taxis)

Primary school age

Special school
Teacher aide services
Parent/child counselling services
Legal services (e.g. advice about rights under Disability Discrimination Act)
Out of school hours care/vacation care
Recreation services
Transport services
Aids/equipment services
Parent advocacy groups
Disability support groups (e.g. Carers networks)

Early adulthood

Sexual health advice/management services
Legal services
Recreation services
Peer support services
Out of school hours care/Vacation care
Transport services
Aids/equipment services
Parent advocacy groups
Disability support groups

Legal entry age to workforce

Post-school options services
School to work transition management
Open employment services
Family support services
Transport services
Peer support services
Open employment services
Income support management/advisory services
Legal services
Respite care services
Accommodation support services
Independent living advisory/support services
Aids/equipment services
Parent advocacy groups
Disability support groups
Mentor services (e.g. 'Buddy' programs)

Middle/older age

Independent living advisory/support services
Open employment services
Supported accommodation services
Respite care services
Home modification services (e.g. Home and Community Care)
Support services for ageing carers
Mentor services
Appropriately designed nursing homes

Special challenges

Services for people with Acquired Brain Injury/stroke and their carers
Accommodation (and appropriate placement) services for younger people with disability
Services appropriately planning for/supporting people with dementia and their carers

The Particular Case of Respite Care

Respite care is intended to provide short-term care for people with a disability needing extra assistance to remain independent or 'fall back' assistance for carers of people with a disability requiring time out from carer responsibilities. Although the need for respite care is sometimes included in the lot of unmet need, there is some sound argument for treating it as a separate entity. First, respite care is not the answer for people seeking long-term solutions in instances of permanent disability.

Second, as the community ages, so must the demand for more respite care increase. A danger is that respite care will become regarded as a 'bottomless pit' and service recipients and service operators alike are treated as mendicants, always crying out for more money, for a need that can never, by definition, be satisfied.

Currently, respite care places are being filled-up by individuals in need of long-term solutions. The NSW Community Services Commission estimated in December 1998 that 40 per cent of designated respite care beds were not used for respite at all; but were continuously occupied by consumers who had been there for (on average) 3.3 years (and in one case for 20.5 years).(5) The majority of long-term users of respite care are reported as having challenging behaviour, and are unable to be accommodated effectively in supported accommodation.

The unmet demand for respite services, itself, reaches substantial proportions. While the majority of primary carers nationally, 345 100 (or 76 per cent), say they do not need any respite to support them in their caring role, only 59 100 (or 13 per cent) of primary carers receive respite. Ten per cent of primary carers report that they need respite but have never received it.(6)

The Role of Advocacy Groups

Achieving advancement on unmet need relates not only to the responsibilities of governments, but also to the role of advocacy organisations. Their requests for more resources to address need are often characterised as unreasonable (in the context of competing demands), relentless, not comprehensive or uncoordinated. Social commentators Robin Banks and Rosemary Kayess suggest that current advocacy practice in Australia is strongly influenced by the dominant 'citizen advocacy' model which, while focusing on the defence of the 'best interests' of individuals, dissipates energy which could be spent addressing systemic social barriers.(7)

The National Disability Advocacy Program funds disability advocacy organisations at national, State and local/regional levels. A Review of the Program was conducted, and reported in 1998. It proposed that the Program be taken in new directions focussing primarily on the needs of individuals with disabilities, their families and carers, and less on seeking changes at a systemic level.(8)

A Western Australian joint submission (i.e. a State Government agency together with advocacy groups) to the Federal Review would appear to challenge this view. The submission outlined an approach to advocacy which illustrates the multiple purposes of advocacy and acknowledges that it is part of systemic growth and change. It proposed assessment measures which are inclusive of this developmental process as well as other specific outcomes and outputs. It took a developmental approach because of a belief, shared by many advocacy organisations, that systemic advocacy as well as individual advocacy must remain Commonwealth funded, and that 'any concerns about advocacy [including accountability] should be solved by exploring what is at issue and address that'.(9)

Recommendations from the Review, released in July 1999, support an advocacy role which focuses on people with disabilities, but which requires that the family context of the person seeking assistance is taken into account; and they embrace objectives which include prevention of abuse and discrimination, promotion of rights; enabling informed choice; increasing economic and social participation and assisting equitable participation in community life. Importantly, the recommendations also state that the primary goal of the program should be 'individual advocacy, with a small proportion of systemic advocacy at the local or regional level as agreed in revised contractual arrangements' and 'that a number of state-based systemic organisations and national advocacy organisations be funded'.(10)

In a general sense, advocacy organisations have expressed concern that their advocacy role is in danger of being weakened, by catering more to the program objectives of governments and less to the needs of the constituents they serve. This is also the case in community fields other than disability. For example, representatives of non-government agencies which have won Jobs Network contracts are now commenting on the 'quietening' of criticism of Government by agencies in receipt of contracts, or hopeful of receiving contracts. Agency representatives have expressed concern that non-government Jobs Network agencies may be compliant with Government in denying benefits to the very people on whose behalf they would have once been vigorously advocating.(11)

Concern along these lines was again highlighted on 23 July 1999, when it was revealed that a condition of funding agreements between the Commonwealth Department of Family and Community Services and peak non-government organisations involves advance disclosure of 'controversial issues planned for media coverage'.(12) On the face of it, this condition would appear to impose a measure of control over the free speech of advocacy groups. In response to this concern, the Government has stated that advance copies of media releases enable correction of inaccuracies, clarification or remediation before being made public, and has argued that such agreements were common under previous governments.

General concern about the current and potential focus of advocacy groups remains a hot issue, however. The variety and range of advocacy organisations which now exist have grown up for a whole range of reasons, from parent advocacy to rights-based advocacy to specialist fields of advocacy. But, as the National Disability Advocacy Review noted, 'significant areas of Australia do not have access to a [advocacy] service.(13) There is a strong imperative for advocacy organisations, with government support, to address this shortcoming.

In an attempt to reach towards universal geographic coverage, is there also the possibility of reconciling 'common ground' in approaches to advocacy? Pat Hanley, National Services Manager for New Zealand CCS (a peak disability organisation) comments on the need for a changing role of voluntary disability agencies from supporter of 'worthy causes' towards embracing the full meaning and potential of citizenship. He notes that the main hope voluntary agencies can legitimately offer is 'based on their record of advocacy for the common good, capacity for innovation in addressing social issues, the absence of barriers to voluntary association, community foundations and a capacity for inclusion based on freedom of association'.(14) Hanley argues that public advocacy is all but disappearing in an environment of competition to win government contracts.

How might common ground be achieved in an Australian context? Banks and Kayess suggest the need for advocacy principles to address means of increasing access to advocacy, that is, by people with impairments and by ensuring involvement of a diversity of groups and individuals.(15) They argue that the overarching goal of advocacy should be to achieve far-reaching social change through the removal of disabling barriers, and that this will rely on highly skilled, professional advocates working in conjunction with individual advocates. In this model, change at systemic and individual levels are both parts of the overarching goal. Government assistance for the development of a strong and professional advocacy sector is seen as legitimate and necessary for:

  • self-determination among people with disabilities
  • the accountability of individual advocates
  • links to structural change to be recognised and acted upon and for the achievement of specific service delivery outcomes and goals.

Any failure to build in policy analysis and development skills for systemic advocacy, skills for individual advocacy, and links between the two is predicted to lead to a complaints-driven process which will provide redress only for the querulous.

A Commonwealth Response to Unmet Need

On 4 August 1999 the Commonwealth Family and Community Services Minister, Jocelyn Newman, announced a $150 million injection of funds as a 'top-up' to the Commonwealth-State Disability Agreement. The funds are proposed to address unmet need in areas such as accommodation, respite care and home support. The Commonwealth is seeking contributions from each State and Territory to fund a share of unmet need. The Commonwealth strategy has some inherent opportunities and risks. Clearly, the Government has taken an initiative in a debate marked by acrimony and poor leadership. However, the success of the strategy in terms of outcomes for individuals requires collective planning focused on the longer term rather than one-on-one negotiations occurring through bilateral agreements (and in a climate where States are claiming an incapacity to locate any additional resources). This is particularly true when considering that planning for accommodation needs requires a longer lead time than the available two-year funding window ($50 million of the Commonwealth funds are to be made available in the first year, $100 million in the following year).

Where to in Dealing with Unmet Need?

The ideal espoused by the first Commonwealth State Disability Agreement sought the achievement of a full community life supported by specialist and mainstream services for people with disabilities and their families. The reality for people with disabilities and their carers has fallen far short of that ideal. The CSDA focus has since been sharpened to one of 'government provided or funded specialist services for people with a disability', but the overall objective remains one of the Commonwealth and States striving 'to enhance the quality of life experienced by people with a disability through assisting them to live as valued and participating members of the community'.(16)

While governments have acknowledged the 'significant gap between the level of need for specialist disability services and the capacity of the existing system to meet this need'(17) there remains a question over how and whether the gap will be met. Will the future for disability services be one of increasing competition and query among sectional lobby groups over a shrinking disability services cake? Or will there be a strengthened advocacy approach, strongly supported by governments and additional allocations of government resources to better balance needs with effective services and the achievement of broader social objectives? The answers to these questions may depend largely upon the degree to which participants in the discussion seek to be inclusive in their problem solving. To date, both the non-government disability field, the Commonwealth and the States/Territories have practised exclusion, whether this has involved seeking a better deal for a particular disability area, or the negotiation of bilateral arrangements for 'strategic' disability issues.

Should agreement be reached about the formulation of a national disability plan, Governments, service agencies and advocacy groups could be mobilised to ensure both consistency of local planning with national objectives and a harnessing of the enormous energy and strength which currently flows from local organisations (but which can also be very rapidly dissipated, if merely focussed on a fight for fairer resource allocation). A national disability plan might also include endorsement of good practice modelling. Such an approach is a means of updating organisational practice in a community sector characterised by organisations which are widely diverse in size, structure and operational styles. Furthermore, it is an approach which has broad acceptance within the community sector, generally.

Examples of good practice might include:

  • creation of Government-sponsored brokerage arrangements for private delivery of particular types of services for people with disabilities (e.g. home maintenance, gardening etc.)
  • resourcing of collaborative arrangements between service agencies, locally, to better target needs-based service planning and to pool resources spent on administration, training and particular types of equipment, while retaining service autonomy

In a national disability plan, some steps needing agreement include:

  • definitions of disability and the quantum of disability. (There has been substantial progress on definitions and on data collections since 1993, providing greater specificity in defining the types, causes and extent of disability. However, resource expenditure still falls short of identified need, suggesting a requirement to both increase resources and to tie these to specified outcomes across jurisdictions)
  • investment of resources in training for and operation of a strengthened advocacy process which links individual advocacy to systemic advocacy
  • exploration of innovative ways to get services operating optimally, thereby reducing 'referred' demand, rather than simply backfilling unmet need
  • equity in service provision (both geographic and in respect of the type of disability service)
  • acknowledgment in proposed solutions of the true cost of a disability (that is, the costs of removing barriers to employment, participation in community activities and citizenship) and thereby exposing the costs and savings to the community of unmet need.

Disability advocacy groups have acknowledged the 'glimmer of hope' held out in the Commonwealth offer to address unmet need.(18) The National Disability Advisory Council has acknowledged the unmet need priorities previously documented by the AIHW and has identified the need for effective planning to address both immediate unmet need and longer term issues. The challenge will be the extent to which such a process can look beyond the stated aspiration of 'whole of government' approaches to embrace 'whole of community' systemic solutions.

Endnotes

  1. Ros Madden, Xingyan Wen, Ken Black, Karen Malam and Simon Mallise, The demand for disability support services in Australia, Australian Institute of Health and Welfare, 1996.

  2. National Disability Advisory Council, Unmet Need-Some Future Directions, 29 March 1999, p. 1.

  3. Dr Denis Napthine, Minister for Youth and Community Services, Commonwealth Fails to Deliver on Disability Funding: Napthine, News Release, 9 April, 1999.

  4. Australian Bureau of Statistics, Disability, Ageing and Carers: Summary of Findings, Catalogue 4430.0, 1999.

  5. Community Services Commission of New South Wales, Respite Care-a system in crisis, December 1998.

  6. Australian Bureau of Statistics, Disability, Ageing and Carers: Summary of Findings, op. cit.

  7. R. Banks, and R. Kayess, 'Disability Advocacy: Too Much Talk and Not Enough Action' in Justice for People with Disabilities, Hauritz, Sampford and Blencowe, eds, Federation Press, 1998, pp. 155-168.

  8. Commonwealth Department of Health and Family Services, National Disability Advocacy Program Review-Draft Steering Committee Report, August 1998.

  9. A Joint WA Submission to the Federal Review of the Advocacy Program (on web site of Disability Information and Communication Exchange: http://www.dice.org.au/ )

  10. Department of Family and Community Services, National Disability Advocacy Program Review Report, July 1999.

  11. David Thompson and Mission Australia on 'The Religion Report', ABC Radio National, 21 July 1999.

  12. 'Welfare funds tied to "collaboration"', The Australian, 23 July 1999, p. 3.

  13. Commonwealth Department of Health and Family Services National Disability Advocacy Program Review, op. cit., p. 15.

  14. W. P. Hanley, 'Voluntary Sector Association as Part of the Problem or Part of the Solution', in Justice for People with Disabilities, op. cit., pp. 139-152.

  15. R Banks and R Kayess, 'Disability Advocacy: Too Much Talk and Not Enough Action', Justice for People with Disabilities, op. cit., p. 164.

  16. Agreement between the Commonwealth of Australia and the States and Territories of Australia in relation to Disability Services, May 1998, Clause 4 (1).

  17. op. cit., Clause 8 (9)(a).

  18. National Council on Intellectual Disability, Disability Funding-Commonwealth Offers a 'Glimmer of Hope', Press Release, 5 August 1999.

 

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