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
-
- 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.
- National Disability Advisory Council, Unmet Need-Some
Future Directions, 29 March 1999, p. 1.
- Dr Denis Napthine, Minister for Youth and Community Services,
Commonwealth Fails to Deliver on Disability Funding:
Napthine, News Release, 9 April, 1999.
- Australian Bureau of Statistics, Disability, Ageing and
Carers: Summary of Findings, Catalogue 4430.0, 1999.
- Community Services Commission of New South Wales, Respite
Care-a system in crisis, December 1998.
- Australian Bureau of Statistics, Disability, Ageing and
Carers: Summary of Findings, op. cit.
- 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.
- Commonwealth Department of Health and Family Services,
National Disability Advocacy Program Review-Draft Steering
Committee Report, August 1998.
- 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/ )
- Department of Family and Community Services, National
Disability Advocacy Program Review Report, July 1999.
- David Thompson and Mission Australia on 'The Religion Report',
ABC Radio National, 21 July 1999.
- 'Welfare funds tied to "collaboration"', The
Australian, 23 July 1999, p. 3.
- Commonwealth Department of Health and Family Services
National Disability Advocacy Program Review, op. cit., p.
15.
- 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.
- R Banks and R Kayess, 'Disability Advocacy: Too Much Talk and
Not Enough Action', Justice for People with Disabilities,
op. cit., p. 164.
- Agreement between the Commonwealth of Australia and the
States and Territories of Australia in relation to Disability
Services, May 1998, Clause 4 (1).
- op. cit., Clause 8 (9)(a).
- National Council on Intellectual Disability, Disability
Funding-Commonwealth Offers a 'Glimmer of Hope', Press
Release, 5 August 1999.